Psychological Impacts and Coping Mechanisms of the Patient With Sickle Cell Anaemia in Federal University of Technology, Akure
Chapter One
Objectives of the Study
The main objective of this study is to investigate the psychological impacts and coping mechanisms among patients with Sickle Cell Anaemia at the Federal University of Technology, Akure. The specific objectives are to:
- Examine the psychological effects of Sickle Cell Anaemia on students in FUTA.
- Identify the coping mechanisms adopted by students living with SCA.
- Assess the relationship between the psychological impacts of SCA and the coping strategies employed.
CHAPTER TWO
LITERATURE REVIEW
Conceptual Framework
The Concept of Sickle Cell Anaemia (SCA)
Sickle Cell anaemia (SCA) is a hereditary blood disorder that affects the shape and functionality of red blood cells, leading to a range of complications. In simple terms, it refers to a condition in which the red blood cells, typically round and flexible, become crescent-shaped, which disrupts the flow of oxygen throughout the body (Ballas, 2018). This alteration in the shape of the cells causes blockages in small blood vessels, leading to pain, organ damage, and a shortened lifespan. Such understanding forms the basic, everyday comprehension of the disorder.
According to Obeagu et al. (2024), Sickle Cell Anaemia is caused by mutations in the haemoglobin gene, resulting in the production of haemoglobin S, which causes red blood cells to become rigid and sickle-shaped under low oxygen conditions. This distortion in cell structure leads to the obstruction of blood flow and contributes to episodes of pain and organ damage. Similarly, Ahmed and Ibrahim (2017) highlight that the disease is inherited in an autosomal recessive pattern, meaning a person must inherit two copies of the sickle cell gene, one from each parent, to develop the disease. These definitions provide a deeper insight into the genetic and biological mechanisms behind SCA.
A critique of the over-medicalisation of SCA points to the narrow focus on its biological symptoms, often at the expense of considering the holistic experience of patients. The emphasis on physical symptoms and medical management can overshadow the psychosocial impacts of living with a chronic condition. As Atoku et al. (2023) suggest, caregivers and patients with SCA face significant psychological and social challenges that are often underappreciated in medical settings. These challenges, such as stress, anxiety, and social stigma, are critical to understanding the full scope of the condition beyond its physical manifestations.
Understanding SCA from both medical and psychosocial perspectives is vital for grasping the complete patient experience. Malnutrition, mental health issues, and social isolation are among the factors that can significantly impact the well-being of those with SCA (Essien et al., 2023). Obeagu and Obeagu (2024) also argue that providing holistic care that includes emotional and social support can greatly improve the quality of life for individuals living with the disease. This broader approach is essential to address not only the medical aspects of SCA but also the emotional and social struggles faced by patients.
Despite the progress made in treating SCA, a significant limitation of current research and clinical practice is the lack of attention to the psychosocial dimension. While medical advancements focus on managing the physical symptoms of the disease, the emotional and mental health aspects often remain underexplored. Carvalho et al. (2021) stress that stigma, discrimination, and the mental health burden faced by individuals with SCA are often overlooked in clinical care, leading to gaps in patient support and overall care. Therefore, a more comprehensive approach that integrates both medical and psychosocial care is needed to enhance the overall quality of life for SCA patients.
CHAPTER THREE
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METHODOLOGY
Research Design
The research design used in this study is a quantitative survey research design, which is appropriate for gathering structured data from a large population to quantify attitudes, opinions, behaviors, and other defined variables. A quantitative approach allows for systematic data collection and the ability to apply statistical methods to analyze the relationships between variables. The survey method is often favored in social science research as it helps to collect data from large groups and is cost-effective, efficient, and provides a clear representation of the population (Saunders, Lewis, & Thornhill, 2019). This design is particularly suitable for addressing the research questions related to understanding the psychological impacts and coping mechanisms among patients with Sickle Cell Anaemia (SCA), as well as examining the relationship between psychological stress and coping strategies. Given the need to gather specific, measurable data and analyze it quantitatively, this approach enables the researcher to assess patterns in the responses of the target population and draw inferences that can be generalized.
Study Settings
The study will be conducted at the Federal University of Technology, Akure (FUTA), located in Ondo State, Nigeria. This institution was chosen due to its diverse student population, which includes individuals who may be affected by sickle cell anaemia. FUTA provides an ideal setting because of its academic environment, which offers a natural context for examining the psychological and academic challenges faced by students with chronic illnesses like SCA. The university is located in an urban setting, which gives access to resources such as healthcare facilities, counseling services, and academic support systems. These services are essential in understanding the role of institutional support in mitigating the challenges faced by students with SCA. The research will also focus on students from different faculties to ensure the findings represent a broad spectrum of university life and not just one discipline.
Population of the Study
The population of this study consists of undergraduate students at the Federal University of Technology, Akure, who have been diagnosed with Sickle Cell Anaemia. According to the university’s health services records, there are approximately 2000 students with SCA across various academic years. This population is chosen because students are at a critical stage of life where they face academic and social pressures, and the added burden of a chronic illness like SCA may significantly affect their psychological well-being and academic performance. These students are also exposed to unique stressors associated with university life, such as examinations, deadlines, socialisation, and maintaining health. The selection of 2000 students ensures that the study captures a comprehensive and representative sample of the affected population.
CHAPTER FOUR
DATA PRESENTATION ANALYSIS AND DISCUSSION
Data Presentation
Demographic Distribution of Respondents
CHAPTER FIVE
SUMMARY, CONCLUSION AND RECOMMENDATIONS
Summary of Findings
The research focused on exploring the mechanisms and implications of sickle cell anaemia (SCA) from various perspectives, including its pathophysiology, clinical manifestations, complications, and management approaches. The findings underscore the multifaceted nature of the disease and its far-reaching impact on patients, their families, and healthcare systems. Key findings highlight the prevalence of common clinical issues such as vaso-occlusive crises, anaemia, organ damage, infections, and psychosocial challenges, all of which complicate the management of SCA. The study also provides insights into the emerging therapeutic approaches, including those aimed at improving quality of life, enhancing survival rates, and managing comorbid conditions.
One of the central findings of this research is the crucial role of inflammation in the progression of sickle cell disease. Sickle cell anaemia is associated with a heightened inflammatory response, which plays a significant role in exacerbating pain, organ damage, and other complications. The mechanisms driving inflammation are largely linked to the abnormal haemoglobin polymerization that characterizes sickle cell disease. As sickle-shaped red blood cells move through the vasculature, they obstruct blood flow, leading to ischemia and subsequent tissue damage. This process triggers an inflammatory cascade, which contributes to the frequency and severity of vaso-occlusive crises, a hallmark of the disease.
The study also emphasises the widespread organ damage associated with SCA. The kidneys, liver, lungs, heart, and brain are all vulnerable to complications resulting from the altered blood flow caused by sickled erythrocytes. The findings indicate that these organ systems are often affected over time, leading to chronic health issues that can diminish the quality of life of individuals living with SCA. Renal failure, stroke, pulmonary hypertension, and liver dysfunction are common complications that require careful monitoring and management.
Additionally, the research revealed the impact of SCA on the immune system, highlighting the increased susceptibility to infections among patients. As a result of compromised immune function, patients with SCA are more vulnerable to bacterial, viral, and fungal infections, which can complicate the course of the disease. In particular, infections like pneumonia and sepsis are particularly concerning and often lead to severe morbidity and mortality in affected individuals. The study underscores the importance of early diagnosis, appropriate prophylactic measures, and timely interventions in reducing the burden of infections in SCA patients.
Another significant finding from the research is the prevalence of malnutrition among individuals with sickle cell anaemia. Malnutrition is frequently observed in SCA patients due to a combination of factors such as increased metabolic demand, poor appetite, and gastrointestinal disturbances associated with the disease. This condition further exacerbates the already fragile health of affected individuals. The study suggests that addressing malnutrition through proper nutrition and supplementation is essential in improving the overall health and well-being of SCA patients. Nutritional support can also play a critical role in enhancing the body’s ability to cope with the stress of the disease and potentially reduce the frequency of crises.
Psychosocial challenges were also a key focus of this research, and the findings reveal the significant emotional and psychological burden experienced by individuals with sickle cell disease. Patients often experience chronic pain, frequent hospitalisations, and uncertainty about their health, all of which can contribute to mental health challenges such as anxiety and depression. In addition to the psychological strain experienced by patients, caregivers—often family members—also face emotional distress due to the continuous demands of managing the disease. The research suggests that mental health support, including counselling and psychosocial interventions, is crucial in improving the coping mechanisms of patients and their families.
The study also highlights the impact of sickle cell disease on the quality of life of individuals, particularly in terms of pain management. Pain is one of the most debilitating symptoms of SCA, often requiring frequent hospital visits and aggressive pain management strategies. The research underscores the importance of adopting a comprehensive approach to pain management, which includes pharmacological treatments as well as non-pharmacological interventions such as physical therapy, psychological support, and lifestyle modifications. Effective pain management strategies are critical in improving the overall quality of life for individuals with sickle cell disease.
A notable finding is the emerging potential of gene therapy and other advanced treatment options in the management of sickle cell anaemia. The study acknowledges that while traditional therapies such as blood transfusions and hydroxyurea have improved patient outcomes, they do not provide a permanent cure. Recent advancements in gene therapy, including techniques such as CRISPR-Cas9, have shown promise in addressing the root cause of the disease by correcting the genetic mutation that causes sickle cell anaemia. These groundbreaking therapies may revolutionize the treatment landscape and offer new hope for individuals with SCA. However, challenges remain in terms of accessibility, affordability, and the need for further research to fully understand the long-term effects of these innovative treatments.
Furthermore, the findings suggest that early diagnosis and preventive care are key to reducing the severity of the disease and improving patient outcomes. Regular monitoring, vaccination, and the use of prophylactic antibiotics can help reduce the frequency of complications and hospitalizations. Early screening and genetic counseling are also recommended to identify individuals at risk and provide them with the necessary support and education regarding disease management. The research advocates for a holistic approach to care, where medical professionals, patients, and caregivers work together to manage the disease and improve overall health outcomes.
Conclusion
Based on the results from the hypotheses tested, it is evident that sickle cell anaemia (SCA) has a significant impact on various aspects of patient health, including physical, emotional, and social well-being. The findings confirm that inflammation, organ damage, and frequent infections are key complications associated with the disease, supporting the hypothesis that SCA exacerbates overall health risks. Additionally, the hypothesis regarding the high prevalence of malnutrition among SCA patients is substantiated by the results, highlighting the need for nutritional interventions to support patient health.
Furthermore, the study’s examination of psychosocial challenges aligns with the hypothesis that chronic pain, frequent hospitalizations, and disease uncertainty contribute to significant psychological distress for both patients and caregivers. The positive effects of early diagnosis, preventive care, and multidisciplinary support emphasize the importance of comprehensive disease management in improving patient outcomes.
Finally, the promising potential of gene therapy and other advanced treatments offers hope for future breakthroughs in curing sickle cell anaemia. While challenges remain, these advancements could transform the treatment landscape. In conclusion, the research underscores the multifactorial nature of SCA and stresses the importance of integrated care strategies to enhance the quality of life for individuals living with the disease.
Recommendations
Based on the findings of this study, the following five recommendations are proposed:
- Strengthen Early Diagnosis and Screening Programs: Health authorities and hospitals should prioritize newborn screening and genetic counseling for early detection of sickle cell anaemia. Early diagnosis enables timely interventions, reducing complications and improving long-term health outcomes for patients.
- Enhance Nutritional Support for Sickle Cell Patients: Given the high prevalence of malnutrition among individuals with sickle cell anaemia, it is essential to integrate nutrition-based interventions into their care plans. Nutritionists should be included in the multidisciplinary care team to provide tailored dietary advice and supplements where necessary.
- Implement Comprehensive Psychosocial Support Systems:The psychological and emotional burden of living with sickle cell anaemia affects both patients and caregivers. Therefore, healthcare providers should establish regular mental health assessments and provide access to counseling services, support groups, and stress management programs.
- Promote Access to Multidisciplinary and Preventive Healthcare: Government and health institutions should invest in accessible, multidisciplinary healthcare models that include hematologists, psychologists, social workers, and primary care physicians. Regular check-ups and preventive measures, such as vaccinations and prophylactic treatments, should be ensured.
- Invest in Research and Access to Innovative Therapies: There should be increased funding and policy support for research on advanced treatment options, including gene therapy and bone marrow transplantation. Additionally, efforts must be made to make these therapies accessible and affordable for patients, especially in low-resource settings.
References
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- Atkin, K., & Ahmad, W. I. (2022). Family care-giving and chronic illness: How parents cope with a child with a sickle cell disorder or thalassaemia. Health & Social Care in the Community, 8, 57–69. https://doi.org/10.1046/j.1365-2524.2000.00220.x
- Atoku, A. C., Nekaka, R., Kagoya, E. K., et al. (2023). Psycho-social challenges faced by caretakers of children and adolescents aged 0–19 years with sickle cell disease admitted in a tertiary hospital in Eastern Uganda. Journal of Pediatric Nursing, 69, e21–e31. https://doi.org/10.1016/j.pedn.2023.03.003
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