Assessment Of Level Of Awareness Of Sickle Cell Disease

Project and Seminar Material for Public Health

Assessment Of Level Of Awareness Of Sickle Cell Disease


Abstract


This study was carried out on the assessment of level of awareness of sickle cell disease: a case study of Ilaro. The study focused on pregnant women attending antenatal in Ilaro community, Ogun state. The study adopted a descriptive cross-sectional design anda self-designed questionnaire was the research instrument used for data collection. The researcher determined the sample size of 220 respondents for the study using Taro Yamane sample size formula. From the findings, the knowledge about sickle cell disease and its causes, in this study is low (21.2%), majority of the respondents said they had never heard of sickle cell disease. Most pregnant women in Ilaro community have been exposed to secondary education but unfortunately, were not well informed with the condition of sickle cell disease in pregnancy. The predisposing factors recognized to be responsible for sickle cell disease in pregnant women were parity (14.2%), adoption/miscarriage previously (28.1%), blood transfusion (23%), and being a sickle cell disease patient (28.3%). Increasing access to health information and quality services will greatly affect health seeking behavior and utilization of health services. The results indicated that the major challenge was finances with a response rate of 84.1%, followed by time constraint (62.3%), lack of support from family/friends (59.3%), and accessibility to ANC services (56.9%). The most valid strategy for managing sickle cell disease was that regular medical checkup is necessary during pregnancy (70.4%). The prevalence of sickle cell disease amongst the participants was high. The parity, gestational age at booking, educational status and the birth interval are factors that were found to have affected the prevalence of sickle cell disease in this study. Therefore educating women on early antenatal booking and compliance with the use of prescribed medications (Iron Supplements, Folate and Antimalarials) should also be emphasized to reduce the problem of sickle cell diseaseand its effect on pregnancy outcome in Nigeria.


Table of Content


Chapter One:

Introduction

  • 1.1 Background to the study
  • 1.2 Statement of problem
  • 1.3 Objectives of the study
  • 1.4 Research questions
  • 1.5 Significance of the study
  • 1.6 Scope of study
  • 1.7 Operational definition of terms

Chapter Two:

Literature Review

  • 2.1 Conceptual Review
  • 2.1.1 Concept of Sickle cell disease
  • 2.1.2 Causes of Sickle cell disease in Pregnancy
  • 2.1.3 Management of Sickle cell disease
  • 2.2 Theoretical Review
  • 2.3 Empirical review
  • 2.4 Summary of Literature Reviewed

Chapter Three:

Methodology

  • 3.1 Research Design
  • 3.2 Area of study
  • 3.3 Target population
  • 3.4 Sample Size
  • 3.5 Sampling technique
  • 3.6 Instruments for data collection
  • 3.7 Validity of instrument
  • 3.8 Reliability of Instrument
  • 3.9 Method of data collection
  • 3.10 Method of data analysis
  • 3.11 Ethical consideration

Chapter Four:

Data Analysis and Interpretation


Chapter Five:

Discussion of Findings, Conclusion and Recommendations

  • 5.1 Discussion of Findings
  • 5.2 Implications of findings to Nursing
  • 5.3 Summary
  • 5.4 Recommendations
  • 5.5 Limitations of the Study
  • 5.6 Suggestions for Further Studies
  • References
  • Appendix A

Chapter One


Introduction

1.1 Background to the Study

Sickle cell disease is defined as the condition in which there is decreased level of hemoglobin (Hb) or red blood cells than the normal value (Eltayeb et al., 2014). According to the 2008 World Health Organization (WHO) report, sickle cell disease affected 1.62 billion (24.8%) people globally (WHO, 2008).The risk of sickle cell disease is high in women who are premenopausal and/or pregnant. This is mainly due to menstrual blood loss, increased demand to support the fetus, puerperal blood loss, and it is usually exacerbated by nutritional insufficiency that is common in developing countries (Bick et al., 2016).

Sickle cell disease is a major public health problem worldwide, especially for women of childbearing potential in developing countries. In most countries around the world, an estimated 56 million pregnant women are anemic. It is estimated that the overall prevalence of sickle cell disease in pregnancy is approximately 41.8%, which differs from a minimum of 5.7% in the USA, up to 75% in Gambia (Chathuranga, Balasuriya and Perera, 2014). In the US, it was estimated that the sickle cell disease in pregnancy would increase from 1.8% to 27.4% in the first and third trimesters. Some women become anemic before pregnancy, while others become increasingly anemic during pregnancy (Goonewardene et al., 2019).

Sickle cell disease in pregnancy is 61% in developing countries (WHO / FHE / MSM / 93.5) with a high incidence and severity in pregnant women living in malaria areas and Africa accounts for about 20% of maternal deaths due to pregnancy sickle cell disease in fetuses high risk of premature birth, low birth weight, and perinatal mortality as a result of deterioration of placental oxygen (Idowu et al., 2015). Women often become anemic during pregnancy as there is a high demand for iron and other vitamins due to the physiological burden of pregnancy; inability to meet the required level of these substances either as a result of malnutrition or infection, leading to sickle cell disease (Van den Broek, 2016).

An estimated 2.15 billion people are iron deficient and that this deficiency is severe enough to cause sickle cell disease in 1.2 trillion people worldwide (WHO, 2019). Components About 90% of all sickle cell disease types have iron deficiency. In developing countries, almost half of the population suffers from iron deficiency (Viteri, 2019). About 47% of non-pregnant women and 60% of pregnant women suffer from sickle cell disease worldwide. In the developed world as a whole, the prevalence of sickle cell disease during pregnancy averages 18% and over 30% of them are iron deficient, and the poor most affected (Hughes, 2016).

Women of childbearing potential and pregnant women are at high risk for a negative balance and iron deficiency due to their increased iron requirements due to menstrual and pregnancy requirements. The average demand for iron absorption in adult women and in menstruating adolescents is estimated to be 1.36 mg/day and 1.73 mg/day, respectively. However, 15% of adult women who have menses need more than 2.0 mg/day and 5% even 2.84 mg/day.

The superposition of menstrual losses and the growth of menstruating adolescents increase the need for absorbed iron; 30% require more than 2.0 mg/day; 10% up to 2.65 mg/day and 5% 3.2 mg/day. These requirements are very difficult to meet, even in diets enriched with good quality iron (WHO, 2019). The iron requirement increases significantly in the second and especially in the third quarter to an average of 5.6 mg/day (approximate range of 3.54 – 8.80 mg/day) food, therefore, the importance of iron stores to extract before pregnancy and iron supplements during the Pregnancy.

Iron deficiency during breastfeeding is mainly due to pregnancy and childbirth and can be alleviated in part by lactating amenorrhea. However, once menstruation recommences, iron needs to increase as breastfeeding continues. The risk of iron deficiency during pregnancy and lactation begins with inadequate iron stores during pregnancy in women of childbearing age. Folate deficiency has also been documented during pregnancy, often leading to iron deficiency sickle cell disease and combined folate. This is common among lower socioeconomic groups, who consume mainly grain-based diets (poor folic acid), which are enhanced by prolonged cooking and reheating. The folate requirement doubles in the second half of pregnancy and increases significantly with hemolytic processes such as malaria and hemoglobinopathies. The malabsorption processes, which are common among tropical and low socioeconomic groups, affect the absorption of folic acid (WHO, 2019).


1.2 Statement of Problem

Sickle cell disease is one of the most prevalent public health problems in the world. The WHO estimates that the number of sickle cell disease that affects people around the world is 3.5 trillion in developing countries and that about 50% of all sickle cell disease can be attributed to iron deficiency (WHO/UNICEF, 2014). The worldwide distribution of disease burden of iron deficiency sickle cell disease focuses mainly on Africa and the Southeast Asia-D region. These regions account for 71% of the global mortality rate and 65% of disability adjusted life years. While estimates of the prevalence of sickle cell disease may vary, a significant proportion of young children and women of childbearing age may be adopt anemic (WHO, 2019). It is the only nutrient deficiency that is also significant in industrialized countries. The study of the global database on sickle cell disease WHO shows that the most affected groups are pregnant women (48%) and children 5 to 14 years (46%). As expected, the prevalence of sickle cell disease in developing countries is three to four times higher than in industrialized countries. The most affected populations in developing countries are pregnant women (56%), school-age children (53%) and non-pregnant women (44%). In developed countries, the most affected groups are pregnant women (18%) and preschoolers (17%), followed by non-pregnant women and seniors, both at 12%. Asia has the world’s highest prevalence of sickle cell disease. followed by Africa (WHO, 2019). Almost half of all anemic women live in the Indian subcontinent, where 88% of them develop sickle cell disease during pregnancy.

Available data show that up to 60% of pregnant women in Niger, especially those who live in rural areas, are anemic during pregnancy (WHO, UNICEF, UNFPA and World Bank, 2015). This sickle cell disease is mainly due to the deficiency of folic acid, iron, vitamins and trace elements. Therefore, it is more common in poor and malnourished women. Diet-related sickle cell disease is a major cause of unwanted pregnancy outcomes in Nigerian women. It is a direct and indirect cause of maternal and perinatal morbidity and mortality. It leads to a delay in intrauterine fetal growth and thus to an increase in mortality rates, neonatal and perinatal mortality. Several Nigerian women have died from severe sickle cell disease during pregnancy (Hb <6.0 g / L) (WHO, 2019). Despite the high incidence of sickle cell disease as the cause of maternal mortality in Nigeria, very few interventions currently address sickle cell disease as a major problem of safe maternity in Nigeria. So far, only 58% of pregnant Nigerian women receive iron supplements during pregnancy (WHO, 2019). It is therefore imperative to study not just the prevalence of this concept, but the management and control measures, hence, this study on the assessment of level of awareness of sickle cell disease: a case study of Ilaro community, Ogun state.


1.3 Objectives of the Study

The general objective of this is to evaluatethe level of awareness of sickle cell disease: a case study of Ilaro.

Specifically, the study seeks to;

  1. Determine the level of awareness ofsickle cell disease in pregnancy amongst pregnant women attending antenatal care in Ilaro community.
  2. Assess the strategies used by the pregnant women for the prevention and management of sickle cell disease in Ilaro community
  3. Determine the challenges encountered in the management of Sickle cell disease among pregnant women in Ilaro community

1.4 Research Questions

The following questions were formulated based on the research problem and objectives;

  1. What is the level of awareness ofsickle cell disease in pregnancy amongst pregnant women attending antenatal care in Ilaro community?
  2. What are the strategies used by the pregnant women for the prevention and management of sickle cell disease in Ilaro community?
  3. What are the challenges encountered in the management of Sickle cell disease among pregnant women in Ilaro community?

1.5 Significance of the Study

Findings from the study would generate data on how pregnant women in Ilaro community seek routine healthcare during pregnancy for management of sickle cell disease, and the eventual outcome. This information could serve as a basis for nurses, midwives, and other health workers to improve maternal health and reduce maternal morbidity and mortality. This could be done through improved maternal health care services and encouraged use through evidence based health education programmes. Also, findings will help the health care profession to create more awareness on maternal health and antenatal care services utilization targeted at mothers, because maternal health services when adopted will help maintain optimal health during pregnancy as well as timely management of problems like sickle cell disease, should they arise.

This study would also serve as a point of reference and information based on the results that would be derived from the analysis and interpretation for policy implication by major stakeholders and health authorities. It is desirable to have information on management, prevention and control of sickle cell disease among pregnant women to help bridge any identified gaps and enable them better understand the benefits of early detection, prevention and utilization of antenatal care. Lastly, this study will contribute to the existing body of literature and serve as a reference for future research in related fields.


1.6 Scope of Study

This study is delimited to assessing the assessment of level of awareness of sickle cell disease: a case study of Ilaro.

The variables covered in this study include the knowledge on sickle cell disease amongst pregnant women, prevalence of sickle cell disease in pregnancy among pregnant women, predisposing factors to sickle cell disease in pregnancy amongst pregnant women, and strategies used by the pregnant women for the prevention and management of sickle cell disease in Ilaro community.


1.7 Operational Definition of Terms

Sickle Cell Disease:

Is a condition in which the number of red blood cells or their oxygen-carrying capacity is insufficient to meet physiologic needs, which vary by age, sex, altitude, smoking, and pregnancy status. Sickle cell disease in pregnancy refers to a hemoglobin concentration of less than 110 g/L (less than 11 g/dL) in venous blood implying a reduction in the oxygen carrying capacity of the blood.

Management:

Refers to a system of coordinated healthcare interventions and communications for people with conditions/diseases in which patient self-care efforts are significantly required.

Pregnant Women:

This refers to women who are in their first to third semester of pregnancy; which is the time during which one or more offspring develops inside a woman.


Chapter Five


Discussion of Findings, Conclusion and Recommendations

In this chapter, the researcher discussed the result from the data analysis and relating interpretation to literature review in order to sharpen the focus of discussion using the research question.


5.1 Discussion of Findings

Research Question One: What is the knowledge ofsickle cell disease in pregnancy amongst pregnant women attending antenatal care in Ilaro community?

The socio-demographic characteristics of the study population revealed that out of the 220 respondents, 169 of them were in the age range of 20-29 years while those that were 40years old and above were the least (0.3%). The minimum age of the respondents was 18years while the maximum age was 46years. The mean age of the respondents was 26.8years.About half of the women were self-employed, 26.8% were fulltime housewives, 13.5% were unemployed, and 4.9% were company workers, while 4.4% were Civil Servants.More than three-quarter of the respondents had one form of formal education or the other, while only a meager 2.2% had no any form of education at all. This certainly must have affected their level of awareness and health-seeking behavior hence, the least prevalence of sickle cell disease among those with tertiary education.

The knowledge about sickle cell disease and its causes, in this study is low (21.2%), majority of the respondents said they had never heard of sickle cell disease. This is in line with a similar study conducted in Raichur, India where knowledge about sickle cell disease in pregnancy is very low (6.48%) (Vijaynath et al, 2020).Most women who have heard of sickle cell disease were not able to correctly identify the causes. A major hurdle is the fact that sickle cell disease is not perceived a major health problem by many even by sufferers who ascribed its consequences to general fatigue. Even where the problem is recognized, there may be a reluctance to invest necessary funds owing to skepticism regarding the effectiveness of interventions for controlling it. Evidence of the independent effect of iron status on function would therefore, help in advocacy.The predisposing factors recognized to be responsible for sickle cell disease in pregnant women were parity (14.2%), adoption/miscarriage previously (28.1%), blood transfusion (23%), and being a sickle cell disease patient (28.3%). This was in contrast to a study by Monif (2014) who revealed that women who had malaria during pregnancy were almost five times more likely to be anaemic. Similarly other studies have found almost the same association, which suggest that women who were anaemic during pregnancy were 3 times more likely to be anaemic (Monif et al., 2014; WHO 2016). This can be controlled by providing pregnant women with insecticide- treated bed nets (ITN) and intermittent preventive treatment (IPT) with anti -malarial medication.

The results of this study also showed that the prevalence of sickle cell disease was higher in the multiparous women than the primiparous women (number of times given birth). This is in line with a similar study which showed that high parity pregnancies carry about three times higher risk of developing sickle cell disease in pregnancy than low parity pregnancies, and that the risk of sickle cell disease in pregnancy increases in a dose-response fashion over increasing levels of parity (WHO, 2019).This may be explained by the increased susceptibility to hemorrhage in women having high parity.High parity is among the factors with etiologic potential in causing sickle cell disease in Pregnancy. The WHO defines high parity as five or more pregnancies with gestation periods of ≥ 20 weeks, and low parity as less than 5 pregnancies with gestation periods of≥ 20 weeks (WHO, 2019). Compared to the non-pregnant state, every pregnancy carries an increased risk of hemorrhage before, during, and after delivery. Therefore, higher parity exposes women more frequently to periods of hemorrhage risk.

Research Question Two: What are the strategies used by the pregnant women for the prevention and management of sickle cell disease in Ilaro community?

The highest strategy was that regular medical checkup is necessary during pregnancy (70.4%), adequate treatment is necessary to eradicate hook worm infestation and malaria to prevent sickle cell disease (67.3%), and fasting or missing the meals must be avoided during pregnancy (65.3%). It was strongly kicked against the statement that pregnant women should eat last after consumption of all family members whatever is left over, shown by the response of 10.2% of the respondents.

The prevalence of sickle cell disease amongst women attending ANC in Ilaro community, Ogun state in this study was found to be 56.4%.This falls within the range 35%-75% from previous reports from a study by Chukwubelu and Obi (2014). It is however higher than 29.1% reported from similar studies conducted in Sagamu, 8.8% reported from Enugu and 29.79% from Lagos (Chukudebelu& Obi, 2014; Ojo, 2015; Olodeoku, 2016). The high prevalence of sickle cell disease found among women in this study could be attributed to low educational status, low nutritional and socio-economic status commonly found among residents of urban slums. According to the World Health Organization, a severe public health problem exists if the prevalence of sickle cell disease is equal or greater than 40% in any group (De Benoist et al, 2019). This is therefore, an indication that sickle cell disease during pregnancy is a major problem in Nigeria.

In other studies, pregnant women who were not eating balanced diet properly at least one time per week compared to those who ate two times had the likelihood of developing sickle cell disease. This result is consistent with other studies done in Ethiopia (Argaw, 2015; Bekele, et al, 2016). This significant association might be due to the reason that meat is an important source of heme iron. However, consuming substances like tea immediately after food has a negative association with sickle cell disease during pregnancy. The odds of developing sickle cell disease among pregnant mothers who were consuming tea/coffee immediately after food were 3.6 times greater than the odds of mothers who did not consume tea/coffee immediately after food during their current pregnancy. This result is in agreement with a study done in Egypt and Ethiopia, which showed significant association between sickle cell disease and consumption of tea (Ashiry, 2014). This could be drinking tea/coffee after food intake may affect iron absorption which leads to inadequate dietary iron intake in the pregnant women.

Research Question Three: What are the challenges encountered in the management of Sickle cell disease among pregnant women in Ilaro community?

The challenges to effective management and prevention of sickle cell disease among pregnant women were analyzed in table 4.4 above. The results indicated that the major challenge was finances with a response rate of 84.1%, followed by time constraint (62.3%), lack of support from family/friends (59.3%), and accessibility to ANC services (56.9%). These factors impede the effective adherence and practice of the pregnant women towards sickle cell disease prevention and management. Sickle cell disease in pregnancy is related to different socio-demographic factors which in turn have certain limitations and constraints (Jufar, 2018; Karaoglu, 2020). Studies have shown a higher prevalence of sickle cell disease in young pregnant mothers, large family size and large number of children ever borne. In different studies, age, family size, parity and economical status were found to be significantly associated with sickle cell disease during pregnancy (Jufar, 2018; Karaoglu, 2020) which were consistent with our current study.

In conclusion, the overall prevalence of sickle cell disease indicated that it is a moderate public health problem. Intervention strategies should focus on associated factors of sickle cell disease among pregnant women. Increase awareness for family planning methods might have a contribution for reducing risk of sickle cell disease. Economic and nutritional empowerment should be considered. Large scale longitudinal studies should be done to identify specific etiologies and root causes of sickle cell disease among pregnant women by assessing micronutrients (serum ironand folate).


5.2 Implications of Findings to Nursing

This study has implication for nursing arising form the results and findings. The study indicated that knowledge about sickle cell disease and its causes, in this study is low implying a wide gap in the health education and information space. Health services and facilities should be made accessible for the pregnant women during antenatal care and for mothers during postnatal care to ensure that health linkages are strengthened between these two parties involved (the health beneficiaries and the health agents). This will ensure better health outcomes and safer pregnancies for women. High level of knowledge on sickle cell disease, its causes and management strategies should be disseminated and adequately discussed through awareness programmes, training sessions, workshops and sensitization campaigns which will be anchored by health workers, health educators and other healthcare professionals during their antenatal visit to hospital.


5.3 Summary

The purpose of the study was to determine the lack of awareness on prevention of sickle cell disease in pregnancy among pregnant women in Ilaro community, Ogun state. To achieve the purpose of the study, objectives and research questions were formulated. Related literature pertinent to the study was reviewed under conceptual review, theoretical review, and empirical headings.

From the findings, the knowledge about sickle cell disease and its causes, in this study is low (21.2%), majority of the respondents said they had never heard of sickle cell disease. Most pregnant women in Ilaro community have been exposed to secondary education but unfortunately, were not well informed with the condition of sickle cell disease in pregnancy. The predisposing factors recognized to be responsible for sickle cell disease in pregnant women were parity (14.2%), adoption/miscarriage previously (28.1%), blood transfusion (23%), and being a sickle cell disease patient (28.3%). Increasing access to health information and quality services will greatly affect health seeking behavior and utilization of health services.

The prevalence of sickle cell disease was high (56.4%) among the pregnant women in this study. Assessment of sickle cell disease during pregnancy is important, because it directly or indirectly contributes to the high Maternal and perinatal morbidity and mortality seen in Nigeria. It also affords one the opportunity to institute interventions to prevent complications especially when carried out at booking. Therefore, there is a need to identify the risk factors for sickle cell disease. Among other findings, the study showed that the lack of knowledge of sickle cell disease was almost universal. Additional finding shows a strong correlation between parity and prevalence of sickle cell disease, that the higher the parity, the greater the prevalence of sickle cell disease (“pregnancy too many”).
Measures to improve and demonstrate maternal and child health (MCH) effectiveness through built-in assessment procedures should thus go hand-in-hand with a drive to increase awareness of the need for iron supplements. Such an increased awareness will lead to an increased demand.Ultimately, adherence with iron therapy at the user level is affected by interactions between policy, service system and user factors. As already mentioned, lack of awareness of the prevalence, health impact and economic cost of sickle cell disease, and the efficacy of iron supplementation at all three levels (health policy makers, health care providers and among vulnerable groups within communities) are all significant problems.


5.4 Recommendations

Based on the findings, the following recommendations were made;

  1. There is need for public enlightenment campaigns to sensitize the public on what sickle cell disease is, its causes, risk factors and complications. Strategies should also be put in place to increase awareness on sickle cell disease. These should include dissemination of information via antenatal and under-five clinics, public radio, and community development meetings conducted by extension workers.
  2. Health education and promotion, especially to encourage all pregnant women to book early for antenatal care and to take appropriate intervention measures. Information, Education and Communication (IEC) efforts should be directed towards increasing levels of awareness and commitment at all levels.
  3. All pregnant women should be intermittently screened for the presence of sickle cell diseaseduring the antenatal care visit, instead of just at booking which is the practice in most health facilities.

5.5 Limitations of the Study

The constraints faced by the researcher include time constraint as the researcher had to combine this study with other academic activities and preparations, inadequate material of the study, stress and financial constraints.Also, this work was limited to Ilaro community and pregnant women attending antenatal care; this implies that a general inference cannot be made for other women and mothers on issues related to motherhood practices.


5.6 Suggestions for Further Studies

Based on the research findings, the researcher suggests the following areas for further studies. There is need for more research to analyze the role of risk factors and perception in management of sickle cell disease among pregnant women and mothers as a whole.


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