A Proposal On Psychological Impact On Sickle Cell Anaemia Patients
1. INTRODUCTION
More than Seven Million babies are born each year with a structural or functional abnormality. Many of these birth defects are caused by the inheritance of a defective gene (Piel., Hay., gupta., Wather & Williams, 2013). Sickle Cell Anaemia (SCA) is an inherited birth disorder from parents to the child. It arises when a baby inherits the gene for sickle haemoglobin (HBs), a structural variant of normal adult haemoglobin (HBA) the protein in the disc-shaped red blood cells that carry oxygen round the body from both its parents. Every cell in the human body contains two full sets of genes from each parent (Piel et al, 2013).
In the same vein, Yawn, Buchanan, Ballas, Hassel and James (2014); and Ohijoungbe and Burnett (2013), stated that sickle cell anaemia (SCA) and drepanocytosis, is a hereditary blood disorder, characterized by an abnormality in the oxygen-carrying haemoglobin molecule in red blood cells, and leads to a propensity for the cells to assume an abnormal, rigid, sickle-like shape under certain circumstances. Sickle cell disease occurs when a person inherits two abnormal copies of the haemoglobin gene one from each parent. Several subtypes exist, depending on the exact mutation in each haemoglobin gene. A person with a single abnormal copy does not experience symptoms and is said to have sickle-cell trait. Such people are also referred to as carriers.
Bras (2011) opined that sickle cell disease occurs due to a mutation of the beta globin gene of haemoglobin, causing a substitution of the glutamic amino acid for valine at position six (6) of the beta chain thereby producing on abnormal haemoglobin called hamaglobin S (Hbs), instead of normal haemoglobin, haemoglobin A (HbA). With modified physiochemical characteristics, the molecules of haemoglobin S suffer polymerization and precipitation, leading to a change in form, a deformity of red blood cells which become sickle-shaped. In this case, the viscosity of the blood increases due to the formation of tactoids. Brass went further to say that the inheritance of sickle cell anaemia occurs via an autosomal recessive gene with both parents. In general, asymptomatic carriers of a single affected gene (heterozygous) transmitting the defective gene to their child(ren), who therefore is homozygous (Hbss).
During fetal and early postnatal life, the lack of expression of the Hb SS phenotype is explained by the production of fetal haemoglobin (HB F) which is sufficient to limit, by dilution, the effects of sickling. As the red cells that emerge from the bone marrow carry increasing amounts of Hb S and smaller amount of Hb F, the results of sickling gradually appear. Therefore, newborns begin to manifest the disease from the sixth month of life, when the amount of Hb F begins to approach adult levels (Brass, 2011).
According to Brass (2011), Sickle cell anaemia is the best known hereditary haematological disorder in human being. In his study, he estimated that 30,000 children are born annually with sickle cell anaemia worldwide and thus it is among the most important epidemiological genetic diseases in Brazil and the world. He went further to say that sickle cell anaemia was originally from Africa and brought to the Americas by the forced immigration of slaves, it is more frequent where the proportion of African descendants is grater (the north eastern region and the states of Sao Paulo, Rio de Janeiro and Minas Gerais). In these regions, they observe new cases of sickle cell disease in every 1000 births and sickle cell trait carriers in every 27 births. It is estimated that approximately 2,500 children are born every year with sickle cell disease in Brazil.
The non-white population in Brazil was estimated at 44.66% by the 2000 population census and from 1% to 6% of them have the Hbs gene, thus favouring the continuation of sickle cell anaemia in what is suggested by Brazilian Scientific Literature as a serious public health problem.
The prevalence of sickle cell disorder in Nigerian is alarming when compared to other African countries in the world. It is estimated that out of 150,000 birth annually, more than 100,000 Nigerian children are born each year with sickle cell disorder. Children affected with this disorder suffer a higher than average frequency of illness and premature death in the first five years of birth.
Available statistical information shows that over 40 million Nigerians are carriers of the ‘S’ gene. Indeed, this number far exceeds the total population of every other affected African Country and several of them put together. Despite the large number of people with Sickle Cell Disorder, the Nigerian society in general still has a negative image of sickle cell disease and reported negative perceptions and attitude (WHO, 2006)
The psychosocial impact of sickle cell disorder is devastating and worrisome to parents, families, caregiver and even the children affected by the disorder. Children with sickle cell disease are at risk for maladjustment in almost every area of daily functioning. Specifically, sickle cell disease has been associated with several indicators of psychological maladjustment including emotional and behavioural problems, poor self concept and interpersonal functioning, limited athletics abilities (due in part to illness restrictions) and poor academic performance (Noll., Reither., Purtill., Varinata., Gerthardt and Short 2007).
With respect to the family, caregivers to children with sickle cell disease are burdened with emotional and psychological pain, increased family stress and increased financial demands, which is due in part to the unpredictability of pain crises care in sickle cell disease (Moskowits, 2007). Children with sickle cell disease during crises experience severe pains all over their body especially in their legs and back aches. Caregivers to children with sickle cell disease are tasked with the responsibility for managing their child’s care, which includes encouraging their child to engage in preventive behaviours, managing pain episodes, teaching coping skills and providing adequate nutrition and hydration. Moreover, parents of children with sickle cell disease often reports a lack of support by family, relatives and friends when their children have crises. This affects the emotional feeling of parents with frustration and hopelessness. As at today, there is yet a medical treatment or healing for the disease. The best management practice of the disease is preventive measure. Most times, this is done of carried out with genetic counseling of prospective or intending married couples in urban cities and advice given by health practitioners on healthy living programme in the media from electronics and print media.
On the family, the psychosocial impacts of sickle cell are worrisome with financial burden inability to get support with nonchalant attitude and inadequate support to parents of children with sickle cell disease. On the children, they experience pain and frustration, lack of care and support during crises, maladjustment and social functioning, visual impairment, loss of friends, incapacitated with love and affection, education, employment and psychosocial devastation.
2. Problem Statement
In Nigeria, even globally, various studies on sickle cell disease tend to generalize a predisposing factor of sickle cell disease in our society but to the best of the researcher’s knowledge, there has not been a comprehensive study on the psychosocial impact of sickle cell disease in the people with the disease, the study will hopefully fill this gap.
Also, various studies on sickle cell disease have focused on the reason for rise in the trend of sickle cell disease in Nigeria. However, not much have been carried out on the psychosocial impact/effect of sickle cell disease on the parents and other caregivers of the sickle cell disease children/victims, a vacuum which this study intends to fill.
In addition, studies have been carried out on financial burden of the illness (SCD) on caregivers and families, but not much has been examined on the family, social welfare and self help programmes support in relieving the psychosocial burden of disease and consequently, improving the quality of care for the SCD patients, the gap which the research intends to bridge.
This therefore prompted the researcher to carry out study on the psychosocial impact of sickle cell disease and coping strategies adopted.
3. Purpose/Objectives Main Objectives
The main objectives are to explore the Psychosocial Impact of Sickle Cell Disease (SCD) on people living with Sickle Cell Disease (SCD) and their coping styles.
Specific Objectives
Specific objectives of the study are to:
- Assess the knowledge of respondents on causes of sickle cell
- Examine the incidence of sickle cell among respondent
- Assess the psychosocial impact of Sickle Cell Disease (SCD) among selected respondents.
- Investigate the psychosocial impact of sickle cell disease on the parents
- Investigate the coping strategies adopted.
4. Research Questions
- What does the term sickle cell disease imply among the respondents?
- What are the incidences of sickle cell disease in the local government?
- What are the psychosocial impacts amongst people living with sickle cell disease?
- What are the psychosocial effects of sickle cell disease on careers?
- What are the specific coping strategies being adopted by people living with sickle cell disease?
5. Hypotheses
- There is no significant difference between psychosocial impact and coping strategies among respondents.
- There is no significant relationship between knowledge of causes and demographic characteristics of respondents.
- There is no significant relationship between the knowledge of causes and coping strategies among respondents.
6. Significance of the Study
A study of the perceived psychosocial impacts and coping strategies among people living with sickle cell disease in Ogbomoso North Local Government will contribute to the literature on the perceived psychosocial impacts and coping strategies among people living with sickle cell disease in Ogbomoso North Local Government. The study would be useful to the affected people or victims, their parents or caregivers, health care providers and the society at large in broadening their knowledge and understanding on the psychosocial impacts of sickle cell disease and with the coping strategies being employed as well as introduction of social welfare programmes and self-help group programmes, theses would help enhance the quality of life of the affected people thereby ameliorate the burdens of care facing the caregivers.
Also, the findings and result of the study will lead to practical application of the treatment strategies and preventive measures of sickle cell disease in order to reduce the prevalence of sickle cell disease to zero level.
This study will also help the prospective marital couples to have full understanding of the importance of genetic counseling for routine haemoglobin genotype determination so that they will not fall victim of this same problem.
It is hoped that with adequate knowledge and awareness of health care providers, parents or guidance on this condition coupled with public education and counseling now being undertaken by the sickle c ell club of Nigeria, medical personnel etc. it will be possible to reduce the high incidence of this disease condition in our society.
- Scope of the study
This study will examine the psychology impact of living with sickle cell anaemia in Ogbomoso North Local Government. This study will cover the indigenes of Ogbomoso North Local Government and would not be extended to its environs.
8. LITERATURE REVIEW
Concept of Sickle Cell Disease
Sickle Cell Disease (SCD) also known as Sickle Cell Anaemia (SCA) and Drepanocytosis is a hereditary blood disorder, characterized by an abnormality in the oxygen-carrying haemoglobin molecule in red blood cells. This leads to a propensity for the cells to assume an abnormal rigid, sickle-like shape under certain circumstances. Sickle cell disease occurs when a person inherits two abnormal copies of the haemoglobin gene, one from each parent. Seceral subtypes exist, depending on the exact mutation in each haemoglobin gene. Sickle cell is associated with a number of acute and chronic health problems, such as severe infraction, attacks of severe pain (Sickle Cell crisis) and stroke, and there is an increased risk of death. (Global Burden of Disease Study, 2013; Yawn et al, 2014).
According to National Heart, Lung and Blood Institute (NHLBI, 2013), Sickle Cell Anaemia is a blood disorder that causes abnormally shaped red blood cells. Normal blood cells are diskshaped with an indentation in the centre, and they move smoothly through the blood vessels.
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