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In sickle cell anaemia, the red blood cells clump together causing the originally round-shaped red blood cells to appear as semicircular shaped red blood cells, sickle cell anaemia disease is categorized as a disease accompanied by frequent pain, low red cell blood count, and infection. The framework for the study is secondary prevention. Secondary prevention allows for opportunities to improve wellbeing amongst people living with SCD focusing on the health beliefs, and socioeconomic wellbeing. A phenomenological approach was used to collect in-depth data on the effect of socioeconomic and cultural factors from 30 randomly selected individuals living with SCD in Nigeria. Thematic content analysis of participant responses was the qualitative methodology used for this study. Study results indicated that among individuals living with SCD in Nigeria, socioeconomic and cultural factors of the disease contributed to diminishing wellbeing. Common themes included limited education and awareness, financial support, and cultural beliefs as impactful on an individual’s capacity to manage their SCD, leading to diminished wellbeing. A potential positive social change of this study is to share study results and recommendations with public health officials to promote public health policy and practices that can encourage increased awareness, and treatment of SCD to stimulate a better wellbeing of individuals living with SCD.
1.1 BACKGROUND OF THE STUDY
People with sickle cell disease can live a normal life and achieve their dreams and aspirations if the condition is well managed especially from the psychological perspectives. Sickle cell anaemia is a genetic disorder that can be acquired if both parents carry the disease trait (World Health Organization WHO, 2010). In sickle cell anaemia, the red blood cells clump together causing the originally round-shaped red blood cells to appear as semicircular shaped red blood cells (National Institute of Health NIH, 2013). Sickle cell anaemia disease is categorized as a disease accompanied by frequent pain, low red cell blood count, and infection (NIH, 2013). Psychological factors for sickle cell anaemia are well known risk factors for many adverse health outcomes. These psychological factors can indirectly or indirectly influence the wellbeing of students living with sickle cell anaemia. Wellbeing is now commonly proposed as a theme for outcome measures as it reflects the expanded goals of care, from medical treatment of sickle cell anaemia toward broader wellness. Several reliable ways of measuring wellbeing are available, including measures that focus on the presence of positive emotions and the absence of negative emotions, life satisfaction, social engagement, and physical wellness. Such measures of subjective wellbeing emphasize the importance of the hedonic aspects of experience, such as pleasure, satisfaction, and happiness
Sickle cell anaemia affects red blood cell protein called hemoglobin. This hemoglobin carries oxygen to the entire body; however, with sickle cell anaemia the red blood cells are crescent shaped and unable to pass through the blood vessels appropriately (Sickle Cell Disease Association of America SCDAA, 2015). The inability of the crescent-shaped red blood cells to pass through the blood vessels decreases the level of oxygen carried from the lungs to rest of the body. The sickle shape causes red blood cells to deteriorate early, which leads to anemia (NIH, 2013). The long-term effect of sickle cell anaemia over time leads to a progressive and systemic weakening of multiple organs. The resulting symptoms include repeated occurrences of severe pain, anemia, organ damage, and infection (NIH, 2013). An individual with SS genotype which is the sickle cell disorder is likely to suffer pains throughout his or her entire life. This can lead to depression and even suicidal thoughts.
Sickle cell anaemia is a life-threatening disease that can damage how red blood cells break down (Steinberg, 1999). Sickle cell anaemia causes damage to the spleen as blood accumulates in it or when the bone marrow stops manufacturing red blood cells due to the presence of infection (Steinberg, 1999). Sickle cell anaemia patients who experience frequent crisis develop multisystem organ damage including but not limited to renal failure, pulmonary disease, cerebral vascular accidents, weakening of the bone, destruction to the eye, and damage to the central nervous system (Steinberg, 1999). Further complications include priapism (unwanted, painful penile erection) and respiratory problems (Steinberg, 1999).
The wellbeing of students living with sickle cell anaemia is greatly influenced psychologically. A student is a learner or someone who attends an educational institution with the expectation of passing out with a particular level of grade before he/she can be considered successful. During the course of study, students are involved in a lot of mental, physical and social activities which can only be done when in a state of good health. The inability of students living with sickle cell anaemia to participate adequately in all the school activities due to the condition has being a major concern to many scholars because of poor academic outcome that comes with their in-and-out-of-hospital trend the disease normally takes.
The diverse paths and severity of sickle cell anaemia are the result of intrinsic and extrinsic factors ranging from genetic markers, environment, ethnicity, socioeconomic status, religion, and cultural beliefs (Anie et. al., 2010; Cajado et al., 2011). These factors affect the wellbeing and quality of life of students who live with sickle cell anaemia. The wellbeing describes the positive and negative aspects of life that can affect the mental and physical state of the students. This is determined by health status, level of comfort, and state of happiness (Centers for Disease Control and Prevention CDC, 2011). The student’s wellbeing displays the balance between biophysical, psychosocial, sociocultural and spiritual aspect of life (Adegbola, 2011). Wellbeing can be determined by understanding the contributing factors and how individuals cope (Adegbola, 2011). Students living with sickle cell anaemia can be reported to have difficulty coping with pain associated with the condition, which may obstruct with the ability to complete daily academic task, therefore impacting psychologically on his/her wellbeing (Adegbola, 2011). Students living with sickle cell anaemia are mostly perceived as people who do not have a better social life as those without the disease (Adegbola, 2011). This study will however identify the psychological factors influencing the wellbeing of students living with sickle cell anaemia.
1.2 STATEMENT OF THE PROBLEM
It is widely known facts that the wellbeing of students living with sickle cell anaemia is greatly affected due to their inability to actively participate in most educational activities which oftentimes lead to poor performance and other unfortunate educational outcomes. And researchers have previously shown that differences in psychosocial functioning experienced by people with sickle cell anaemia in Nigeria might be the result of divergent levels of health (Anie et al., 2010). Anie et al., (2010) suggested the initiation of basic psychosocial interventions by non-specialized health workers in primary health care team to decrease harmful feelings towards sickle cell anaemia, and to foster the development of sickle cell anaemia management techniques. Researchers have not fully explained the psychological factors influencing the wellbeing of people living with sickle cell anaemia in Nigeria. In this study, the psychological factors influencing the well being of students living with sickle cell anemia will be identified. The study will also determine the socioeconomic and cultural practices of Nigerians that may influence the wellbeing and quality of life of individuals living with sickle cell anaemia with particular focus on students. This study will further explore the psychological impact of the disease based on accessibility to comprehensive management of and may inform the development of future health educational interventions to encourage behavioral change and reduce the disease burden on wellbeing.
1.3 OBJECTIVES OF THE STUDY
The following are the objectives of this study:
1. To determine the psychological factors influencing the wellbeing of students living with sickle cell anaemia.
2. To examine the socioeconomic and cultural practices of Nigerians that may influence the wellbeing of students living with sickle cell anaemia?
3. To analyze the level of accessibility of students living with sickle cell anaemia to comprehensive management to encourage behavioral change.
1.4 RESEARCH QUESTIONS
1. What are the psychological factors influencing the wellbeing of students living with sickle cell anaemia?
2. What are the socioeconomic and cultural practices of Nigerians that may influence the wellbeing of students living with sickle cell anaemia?
3. What is the level of accessibility of people living with sickle cell anaemia to comprehensive management to encourage behavioral change?
1.5 RESEARCH HYPOTHESIS
HO: There are no psychological factors influencing the wellbeing of students living with sickle cell anaemia.
HA: There are psychological factors influencing the wellbeing of students living with sickle cell anaemia.
1.6 SIGNIFICANCE OF STUDY
This research is significant because it focuses on the psychological factors influencing the wellbeing of students living with sickle cell anaemia. Globally, the course and severity of sickle cell anaemia varies as a result of several factors like genetic markers, environmental factors, ethnicity, social and economic variables, religion, and cultural beliefs. The number of sickle cell anaemia patients particularly the students category continues to increase exponentially in Nigeria with no strategic programmatic efforts geared towards improving the wellbeing of the affected persons. This may be due to rampant misconceptions about sickle cell anaemia and the misdiagnosis of hemoglobin phenotypes. After determining the psychological factors influencing the wellbeing of students living with sickle cell anaemia, researchers and providers can explore public health interventions that encourage changes in health behavior and beliefs of patients towards the condition. This research will be a contribution to the body of literature in the area of the psychological factors influencing the wellbeing of students living with sickle cell anaemia, thereby constituting the empirical literature for future research in the subject area.
1.7 LIMITATION OF STUDY
Financial constraint- Insufficient fund tends to impede the efficiency of the researcher in sourcing for the relevant materials, literature or information and in the process of data collection (internet, questionnaire and interview).
Time constraint- The researcher will simultaneously engage in this study with other academic work. This consequently will cut down on the time devoted for the research work.
1.8 OPERATIONAL DEFINITION OF TERMS
Psychological factors: are the factors that talk about the mindset of an individual that drive his actions to seek satisfaction
Wellbeing: the state of being comfortable, healthy, or happy
Anaemia: a condition in which there is a deficiency of red cells or of haemoglobin in the blood, resulting in pallor and weariness.
Sickle cell anaemia: a severe hereditary form of anaemia in which a mutated form of haemoglobin distorts the red blood cells into a crescent shape at low oxygen levels. It is commonest among those of African descent
Red blood cell: is typically a biconcave disc without a nucleus which imparts the red colour to blood, and transport oxygen and carbon dioxide to and from the tissues.
Haemoglobin: a red protein responsible for transporting oxygen in the blood of vertebrates. Its molecule comprises four subunits, each containing an iron atom bound to a haem group.
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