Coping Mechanism Among Clients Living With Sickle Cell Diseases At Lagos University Teaching Hospital

Medical and Health Science Project and Seminar Material

Coping Mechanism Among Clients Living With Sickle Cell Diseases At Lagos University Teaching Hospital


Abstract


This study was carried out on coping mechanism among clients living with sickle cell diseases at Lagos University Teaching Hospital, Idi-Arabs, Lagos. Data for this study were obtained from both primary and secondary source. The primary source includes structured questionnaire; a total of 105 copies of questionnaires were distributed randomly to people living with Sickle Cell Disease in hospitals, schools, Churches and Mosques, while the secondary data were sourced through information from current Journals from internet. The data obtained through these sources were analyzed using frequency tables and simple percentage analysis to discuss the findings of the study. This study shows that the level of understanding and knowledge of respondents to psychosocial impact of Sickle Cell Disease and the management/treatment strategies was adequate. This is evidenced in the fact that greater percentage of the respondents agreed with all the options given i.e., Engaging in a particular intimate relationship, having commitment ambition and industry, maintaining a positive and cheerful outlook on the current situation, letting others know what is of concern and enlisting support by organizing an activity and using professional adviser, such as Counselor. Besides the global burden of Sickle Cell Disease is on the increase on daily basis and same has really affected the quality of life of the victims. Also,these psychosocial problems occurring concurrently both in Sickle Cell Disease patients and their caregivers was seen to be a phenomenon that can have negative impacts both on the victims and the family as a whole, hence this study suggests that parents should be seen in the context of their families holistically. The clinicians should provide the necessary psychological care and support to both the victims and caregivers in order to have better success of their treatment/management strategies. Therefore, it is against this background that Policy makers and non-governmental bodies should come together to organize public lectures and seminars to deliberate on the remedies to be employed in order to ameliorate the incidence of Sickle Cell Disease (SCD) in our society in order to maintain Healthy Nations.


Chapter One


Introduction

1.1 Background of the Study

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 inheritaed 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 produicing 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.


1.2 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-helpprogrammes 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.


1.3 Purpose / Objectives Main Objectives

The main objectives are to explore the coping mechanism among clients living with sickle cell diseases at Lagos university Teaching Hospital,Idi-Arabs,Lagos.

Specific Objectives

Specific objectives of the study are to: –

  1. Assess the knowledge of respondents on causes of sickle cell
  2. Examine the incidence of sickle cell among respondent
  3. Assess the psychosocial impact of Sickle Cell Disease (SCD) among selected respondents.
  4. Investigate the psychosocial impact of sickle cell disease on the parents
  5. Investigate the coping strategies adopted.

1.4 Research Questions

  1. What does the term sickle cell disease imply among the respondents?
  2. What are the incidences of sickle cell disease in the local government?
  3. What are the psychosocial impacts amongst people living with sickle cell disease?
  4. What are the psychosocial effects of sickle cell disease on careers?
  5. What are the specific coping strategies being adopted by people living with sickle cell disease?

1.5 Hypotheses

  1. There is no significant difference between psychosocial impact and coping strategies among respondents.
  2. There is no significant relationship between knowledge of causes and demographic characteristics of respondents.
  3. There is no significant relationship between the knowledge of causes and coping strategies among respondents.

1.6 Significance of the Study

A study of the perceived psychosocial impacts and coping strategies among people living with sickle cell disease in Lagos University Teaching Hospital, Idi-Arabs will contribute to the literature on the perceived psychosocial impacts and coping strategies among people living with sickle cell disease in Lagos University Teaching Hospital, Idi-Arabs. 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.

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Chapter Five


Discussion

5.1 Discussion of Findings

The discussion of findings is based on the data collected through questionnaires from the respondents i.e. people living with sickle cell disease in Lagos University Teaching Hospital, Idi-Arabs.

Table 2 showing the respondents distribution on what the term sickle cell disease imply, form the table, 11.4% (9) of the respondents agreed that sickle cell disease is a hereditary blood disorder characterized by abnormality in the oxygen-carrying haemoglobin molecules in red blood cells, 7.6% (6) said that sickle cell disease is a condition which occurs when a person inherits two abnormal copies of the haemoglobin gene, 1.3% (1) agree that sickle cell disease is a condition that leads to a propensity for the cell to assume an abnormal rigid sickle cell like shape, 77.2% (61) agreed to all the terms while 2.5% (2) gave no response, this indicates that majority of the respondents had full knowledge about the concept of sickle cell disease. This might probably be due to the fact that the respondents were victims of the condition.

On the mode of getting sickle cell disease, 96.2% (76) of the target population agreed that the mode of getting sickle cell disease is when a person inherits two abnormal copies of the haemoglobin gene while 3.8% (3) gave no response. 94.9% (75) of the respondents agreed that sickle cell disease affects all age groups and both sexes while 5.1% (4) gave no response. 92.4% (73) agreed that couple with sickle cell trait is at risk of having sickle child/children while 7.6% (6) gave no response, 94.9% (75) of the target population agree that a person with a single abnormal copy does not experience symptoms and is said to have sickle cell trait while 5.1% (4) gave no response to the question.

From the finding above, it imply that majority of the respondents had full knowledge about the concept of sickle cell disease.

Above description is 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 disk-shaped with an indentation in the center, and they move smoothly through the blood vessels. (CRSCD, 2014) stated that sickle cell disease is the most common inherited blood disorder which is caused by a mutation in the heamoglobin-Beta gene found on chromosome II. Hemoglobin transports oxygen from the lungs to other parts of the body. Red blood cells with normal haemoglobin (hemoglobin A) are smooth and round and glide through blood vessels.

The analysis above gave answer to the research question 1 which stated that “what does the term sickle cell disease imply?”

Table 3 showings the distribution of respondents on the psychosocial impact of sickle cell disease among people living with sickle cell disease, which was widely distributed, from the table, 29.1% (23) of the respondents agreed that Anxious mood is not present, 25.3% (20) agreed that Anxious mood is mild, 30.4% (24) said it is moderate, 11.4% (9) agreed that it is severe while 3.8% (3) agreed that Anxious mood is very severe among people living with sickle cell disease. This indicates that these set if people have taken their conditions as one of the challenges of life, hence doesn’t have much impact in their lives.

As for the level of tension as a psychosocial impact of sickle cell disease among the sickle cell disease people, % (20) agreed that it is not present, 30.4% (24) agreed that it is mild, 29.1% (23) agreed that it is moderate, 8.9% (7) agreed that it is severe while 6.3% (5) of the respondents agreed that it is very severe, this indicate that majority of the respondents carrying the highest represented group claimed that their level of tension on sickle cell diseae was mild which implied that the victims were getting used to the condition.

In the same vein, as for fear, 19% (15) of the respondents agreed that it is not present, 29.1% (23) agreed that it is mild, 32.9% (26) agreed that it is moderate, 11.4% (9) agreed that it is severe while 7.6% (6) of the respondents agreed that it is very severe among people living with sickle cell disease, indicating that majority of the respondents claimed that their lelvel of fear concerning their condition as sickler was moderate while those that claimed that their level of fear were the least represented group, which implied that, most of the victims did not allow the condition to way them down. On the issue of whether they normally experience insomnia, from the same table, 34.2% (27) of the target population said that Insomnia is not present, 24.1% (19) agreed that Insomnia is mild, 29.1% (23) said it is moderate, 8.9% (7) said it is severe among sickle cell disease people this implied that higher percentage of the respondents carrying 34.2% (27) of the respondents carrying agreed that insomnia was not present.

As regard depressed mood, 30.4% (24) of the respondents agreed that Depressed mood is not present, 35.4% (28) agreed that Depressed mood is mild, 17.7% (14) said it is moderate, 11.4% (9) agreed that it is severe while 5.1% (4) agreed that Depressed mood is very severe among people living with sickle cell disease indicating that the respondents that supported that depressed mood was mild carried the highest represented group with 34.4%, this implies that this condition doesn’t have much impact in their daily activities. The above findings negate the view of Annie, Egunjobi and Akinyanju (2011) who opined that mood is an important consequence of sickle cell disease i.e. people with sickle cell disease commonly have low selfesteem and feelings of hopeless as a result of frequent pain, hospitalizations and loss of schooling and employment. These accounts could indicate depressive symptoms, feeling of anxiety and self-hate were common. Even in Nigeria most of these people with sickle cell disease were worried and had depressive thought about their condition. Likewise the view of Morinka (2008) who stated that in assessing the seriousness of this disease (SCD) no one should underestimate its emotional and social impact. The patients endures not only the pain itself, but also the emotional strain from unpredictable bouts of pain, fear of death, and host time and social isolation at school and work.

As for intellectual as a psychosocial impact of sickle cell disease among people living with sickle cell disease, 24.1% (19) of the respondents agreed that it is not present, 22.8% (18) agreed that it is mild, 45.6% (36) agreed that it is moderate while 7.6% (6) said it is very severe, which indicate that these claimed that their intellectual was moderate carried the highest represented group with 45.6% (36). The implication of this is that their educational status will widen their knowledge of the treatment coping strategies aiming at managing their condition well without much stress. This finding is contrary to the opinion of Adegoke and Kuteyi (2010) that frequent school absenteeism as a result of recurrent crisis and suboptimal helath is another major problem of sickle cell disease children.

As for somatic (sensory) 31.6% (25) of the respondents agreed that it is not present, 19% (15) agreed that it is mild, 32.9% (28) agreed that it is moderate, 5.1% (4) agreed that it is severe while 11.4% (9) of the respondents agreed that it is very severe among people living with sickle cell disease. 51.9% (41) of the target population said that cardiovascular symptoms is not present, 26.6% (21) agreed that it is mild, 15.2% (12) said it is moderate, 5.1% (4) said it is severe while 1.3% (1) agreed that cardiovascular symptoms is very difficult among sickle cell disease people. As for Respiratory symptoms as a psychosocial impact among people with sickle cell disease, 49.4% (39) of the respondents agreed that it is not present, 34.2% (27) agreed that it is mild, 11.2% (9) agreed that it is moderate, 2.5% (2) agreed that it is severe while 2.5% (2) said it is very severe. 53.2% (42) of the respondents agreed that Gastrointestinal symptoms is not present, 24.1% (19) agreed that it is mild, 19% (15) said it is moderate, 2.5% (2) agreed that it is severe while 1.3% (1) agreed that it is very severe among people living with sickle cell disease. As for Genitourinary symptoms as a psychosocial impact among sickle cell disease people, 62% (49) agreed that it is not present, 21.5% (17) agreed that it is mild, 13.9% (11) agreed that it is moderate while 2.5% (2) of the respondents agreed that it is very severe. As for Autonomic symptoms, 44.3% (35) of the respondents agreed that it is not present, 39.2% (31) agreed that it is mild, 13.9% (11) agreed that it is moderate while 2.5% (2) agreed that it is severe among people living with sickle cell disease. 35.4% (28) of the target population said that Behaviour at Interview is mild, 25.3% (20) said it is moderate, 7.6% (6) said it is severe while 3.8% (3) agreed that it is very difficult among sickle cell disease people. As for Financial incapacitation as a psychosocial impact among people with sickle cell disease, 38% (30) of the respondents agreed that it is not present, 19% (15) agreed that it is mild, 31.6% (25) agreed that it is moderate, 6.3% (5) agreed that it is severe while 5.1% (4) said it is very severe. 70.9% (56) of the respondents agreed that Family disharmony as a psychosocial impact on sickle cell disease people is not present, 12.7% (10) agreed that it is mild, 13.9% (11) agreed that it is moderate while 2.5% (2) agreed it is severe in people with sickle cell disease. Lastly, 50.6% (40) of the target population agreed that Peer Group Isolation is not present in people with sickle cell disease, 21.5% (17) agreed that it is mild, 19% (15) agreed that it is severe while 6.3% (5) agreed that Peer group isolation as a psychosocial impact is very severe in people with sickle cell disease. A total of 39.2% agreed that all the listed psychosocial impact is not present in people with sickle cell disease, 25.62% agreed that the above psychosocial impact is mild in people with sickle cell disease, 24.18% of the respondents agreed that above psychosocial impacts is moderate in sickle cell disease people, 5.81% agreed that the impact on people with sickle cell disease is sever while 4.76% of the target population agreed that above psychosocial impact on people with sickle cell disease is very severe. This therefore give answer to research question 3 which stated that “what are the psychosocial impact of sickle cell disease among people living with sickle cell disease?”

The psychosocial effects among people living with sickle cell disease were shown in table 4, 30.4% (24) of the respondents agreed that Depressed mood is not present, 35.4% (28) agreed that Depressed mood is mild, 17.7% (14) said it is moderate, 11.4% (9) agreed that it is severe while 5.1% (4) agreed that Depressed mood is very severe among people living with sickle cell disease. 51.9% (41) of the target population said that cardiovascular symptoms is not present, 26.6% (21) agreed that it is mild, 15.2% (12) said it is moderate, 5.1% (4) said it is severe while 1.3% (1) agreed that cardiovascular symptoms is very difficult among sickle cell disease people. As for Respiratory symptoms as a psychosocial impact among people with sickle cell disease, 49.4% (39) of the respondents agreed that it is not present, 34.2% (27) agreed that it is mild, 11.2% (9) agreed that it is moderate, 2.5% (2) agreed that it is severe while 2.5% (2) said it is very severe. 53.2% (42) of the respondents agreed that Gastrointestinal symptoms is not present, 24.1% (19) agreed that it is mild, 19% (15) said it is moderate, 2.5% (2) agreed that it is severe while 1.3% (1) agreed that it is very severe among people living with sickle cell disease. This implies that this group of people i.e. people living with sickle cell disease received better treatment from both the health care providers and the family as a result of their wider knowledge about SCD. Hence, there is less problem of depressed mood and other cases of cardiovascular, respiratory and gastrointestinal symptoms or complications observed in them. This finding is contrary to the view of Global Burden of Disease study, 2013 and Yawn, Buchanan, Ballas, Hassell and James (2014) who opined that acute chest symdrome is defined by at least two of the following signs or symptoms: Chest pain, Fever, Pulmonary infiltrate or Focal abnormality, Respiratory symptoms or Hypoxemia. It is the second-most common complication and it accounts for about 25% of deaths in patients with sickle cell disease, majority of cases present with vaso-occlusive crises then they develop acute chest syndrome. Nevertheless, 80% of patients have vaso-occlusive crises during acute chest syndrome. Also amongst the chronic cardiopulmonary complications of sickle cell disease, pulmonary hypertension has emerged as the major threat to the well-being and longevity of patients with sickle cell disease.

As for Financial incapacitation as a psychosocial impact among people with sickle cell disease, 38% (30) of the respondents agreed that it is not present, 19% (15) agreed that it is mild, 31.6% (25) agreed that it is moderate, 6.3% (5) agreed that it is severe while 5.1% (4) said it is very severe. This negate the opinion of Adegoke and Kuteyi (2012) who claimed that about 70% of the caregivers lost income or financial benefits due to time spent caring for their children. In Nigeria, the predominant form of health care financing is out-of-pocket. As observed previously above, job loss, under employment and/or unemployment arising from time spent caring for a child with sickle cell disease, will significantly contribute to the financial burden experienced by caregivers and their family.

70.9% (56) of the respondents agreed that Family disharmony as a psychosocial impact on sickle cell disease people is not present, 12.7% (10) agreed that it is mild, 13.9% (11) agreed that it is moderate while 2.5% (2) agreed it is severe in people with sickle cell disease, this negate the opinion of Tunde Ayinmode (2008) who stated that when an individual behaves in a way to change an impact he may simultaneously create another e.g. the taking on of extra work by mother of a sickle cell disease child to reduce the financial burden of sickle cell disease, may mean an increased risk of physical, social and emotional neglect of her family with consequent marital disaharmony.

Lastly, 50.6% (40) of the target population agreed that Peer Group Isolation is not present in people with sickle cell disease, 21.5% (17) agreed that it is mild, 19% (15) agreed that it is severe while 6.3% (5) agreed that Peer group isolation as a psychosocial impact is very severe in people with sickle cell disease. This finding is in disagreement with the opinion of Anie, Egunjobi and Akinyanju (2011) that anecdotal evidence suggest teasing and bullying are common complaints among school going children with sickle cell disease. Other major psychosocial problems experienced by young peoplewith sickle cell disease during their school g oing years have also benn described important issues include fear of early death, fears of talking to friends and teachers about the condition, e mbrarrassment about bedwetting and reluctant to take part in school trips because of this teasing by colleagues due to jaundice and associated discolouration of their eyes, and anger should ill-informed staff consider the child as lazy and wanting to keep away from school activities. Anxieties that young people with sickle cell disease experience at school may result in the development of a negative image of themselves, teachers and school staff. A total of 49.2% agreed that all the listed psychosocial effects is not present in people with sickle cell disease, 24.79% agreed that the above psychosocial effects is mild in people with sickle cell disease, 18.2% of the respondents agreed that above psychosocial effects is moderate in sickle cell disease people, 4.3% agreed that the impact on people with sickle cell disease is sever while 3.44% of the target population agreed that above psychosocial effects on people with sickle cell disease is very severe. From the findings analyzed above, the researcher can infer the both the family and the peer group had grpup understanding and awareness about sickle cell disease, hence, they showed great concern and positive attitude towards people living with sickle cell disease. This therefore provides answer to research question 4 which stated that “what are the psychosocial effects of sickle cell disease on the people living with sickle cell disease”?

The table 5 above shows the specific coping strategies adopted by people living with sickle cell disease. 35.4% (28) agreed that sharing the problem with others and enlisting support in its management was never a coping strategy adopted by people living with sickle cell disease, 15.2% (12) seldom sharing the problem with others and enlisting support in its management, 31.6% (25) agreed that people with sickle cell disease sometimes share the problem with others and enlisting support in its management, 7.6% (6) agreed that they often sharing the problem with others and enlisting support in its management while 10.1% (8) agreed that they sharing the problem with others and enlisting support in its management very often. 13.9% (11) of the respondents said people with sickle cell disease never reflect on the problem, plan solutions and tackle the problem systematically, 17.7% (14) said they seldom reflect on the problem, plan solutions and tackle the problem systematically, 30.4% (24) of the respondents said people with sickle cell disease sometimes reflect on the problem, plan solutions and tackle the problem systematically, 29.1% (23) said sickle cell disease people often reflect on the problem, plan solutions and tackle the problem systematically while reflecting on the problem, plan solutions and tackle the problem systematically was adopted very often by people with sickle cell disease as agreed by 8.9% (7) of the respondents. 17.7% (14) said sickle cell disease people never engage in playing sport and keeping fit, 39.2% (16) said sickle cell disease seldom play sport and keeping fit, 16.5% (13) agreed that they often play sport and keeping fit while 6.3% (5) agreed that playing sport and keeping fit was adopted very often by sickle cell disease people. 6.3% (5) agreed that engaging in general leisure activities not sport either alone or with others was never a copying strategy adopted by people living with sickle cell disease, 22.8% (18) agreed that they seldom engage in general leisure activities not sport either alone or with others, 35.4% (28) agreed that people with sickle cell disease sometimes engage in general leisure activities not sport either alone or with others, 32.9% (26) agreed that they often engage in general leisure activities not sport either alone or with others while 2.5% (2) agreed that they engage in general leisure activities not sport either alone or with others very often. 15.2% (12) agreed that engaging in a particular intimate relationship was never a coping strategy adopted by people living with sickle cell disease, 12.7% (10) agreed that they seldom engage in a particular intimate relationship, 36.7% (29) agreed that people with sickle cell disease sometimes engage in a particular intimate relationship, 22.8% (18) agreed that they often engage in a particular intimate relationship while 12.7% (10) agreed that they engage in a particular intimate relationship. 12.7% (10) of the respondents said people with sickle cell disease never have commitment, ambition and industry, 20.3% (16) of the respondents said people with sickle cell disease sometimes have commitment, ambition and industry, 17.7% (14) said they seldom have commitment, ambition and industry, 20.3% (16) said people with sickle cell disease sometimes have commitment, ambition and industry, 30.4% (24) said they often have commitment, ambition and industry while having commitment, ambition and industry was adopted very often by people with sickle cell disease as agreed by 8.9% (7) of the respondents. 5.1% (4) said sickle cell disease people never maintain a positive and cheerful outlook on the current situation, 20.3% (16) said sickle cell disease people seldom maintain a positive and cheerful outlook on the current situation, 30.4% (24) agreed that they sometimes maintain a positive and cheerful outlook on the current situation, 27.8% (22) agreed that they often maintain a positive and cheerful outlook on the current situation while 16.5% (13) agreed that maintaining a positive and cheerful outlook on the current situation was done very often by people with sickle cell disease. 32.9% (26) of the respondents agreed that people with sickle cell disease never accept one’s best efforts and that there is nothing further to be done, 22.8% (18) agreed that they seldom accept one’s best efforts and that there is nothing further to be done, 19% (15) agreed that they sometimes accept one’s best efforts and that there is nothing further to be done, 16.5% (13) agreed that people with sickle cell disease often accept one’s best efforts and that there is nothing further to be done while 8.9% (7) agreed that sickle cell disease people accept one’s best efforts and that there is nothing further to be done very often. 25.3% (20) of the respondents agreed that sickle cell disease people let others know what is of concern and enlist support by organize on activity, 24.1% (19) agree that they seldom let others know what is of concern and enlist support by organize on activity, 30.4% (24) agreed that people with sickle cell disease sometimes let others know what is of concern and enlist support by organize on activity, 11.4% (9) of the respondents agreed that people with sickle cell disease often let others know what is of concern and enlist support by organize on activity while 8.9% (7) agreed that they let others know what is of concern and enlist support by organize on activity very often. 12.7% (10) of the target population agreed that people with sickle cell disease never use a professional adviser such as counselor, 12.7% (10) agreed that people with sickle cell disease seldom use a professional adviser such as counselor, 17.7% (14) said they sometimes use a professional adviser such as counselor, 31.6% (25) said sickle cell disease people often use a professional adviser such as counselor while 25.3% (20) agreed that people with sickle cell disease use a professional adviser such as counselor very often. A total of 17.72% agreed that the people with sickle cell disease never adopted in the above coping strategies, 18.63% agreed that the above coping strategies were seldom adopted by people with sickle cell disease, 29.11% agreed that those above coping strategies were sometimes adopted b y the people with sickle cell disease, 22.66% agreed that the above coping strategies were often adopted while 11.91% of the respondents agreed that the strategies where adopted very often by people with sickle cell disease. This therefore provided answer to research question 5 which stated that “what are the specific coping strategies being adopted by people living with sickle cell disease?”


5.2 Summary

The study investigated the coping mechanism among clients living with sickle cell diseases in Lagos University Teaching Hospital, Idi-Arabs, Nigeria. Sickle Cell Disorder has been defined as an inherited birth disorder from parents to the child, it arises when a baby inherits the gene for sickle haemoglobin (HBs) or a hereditary blood disorder, characterized by an abnormality in the oxygen-carry haemoglobin molecule in red blood cells that leads to a propensity for the cells to assume an abnormal, rigid, sickle-like shape under certain circumstances. The study explores the psychosocial impact of sickle cell disease (SCD) and the coping strategies of people living with sickle cell disease (SCD) in Lagos University Teaching Hospital, Idi-Arabs.


5.3 Conclusion

It was discovered that majority of the respondents know and identified what sickle cell disease mean and that the mode of getting sickle cell disease is when a person inherits two abnormal copies of the haemoglobin gene.

That sickle cell disease affects all age groups and both sexes and that a person with a single abnormal copy does not experience symptoms and is said to have sickle cell trait.

This study has demonstrated that the psychosocial impact of SCD has high negative impact on persons living with sickle cell disease, their guardian and parents with stress of lack of fiancé to support their wards or children living with sickle cell diseases. It has provided an analysis of the perception and predisposing factors leading to the incidence of sickle cell disease among people. The lack of awareness, high level of illiteracy in Nigeria has led to the rising increase of SCD. This has made the incidence of sickle cell disease in Nigeria high.

In view of the result of this study, the researcher can infer that sickle cell disease (SCD) is an important but largely neglected risk to child survival in most African countries of which Nigeria is inclusive hence greater attention to reducing mortality from sickle cell disease could help some Africa Governments to achieve their targets with regard to Millennium Development Goad (MDG) number 4 i.e. to reduce their under 5 mortality rates by two third (2/3).
In the aspect of the psychosocial impacts of sickle cell disease on the people living with sickle cell disease which is the main focus of the study, tension, fears, insomnia, intellectual, depressed mood, somatic (muscular), somatic (sensory), cardiovascular symptoms, respiratory symptoms, gastrointestinal symptoms, genitourinary symptoms, autonomic symptoms, behavior at interview, financial incapacitation, family disharmony and peer group isolation are psychosocial impacts among people living with sickle cell disease.


5.4 Implication for Nursing Practice

According to the findings of this research result of the study revealed that the global burden of sickle cell disease is increasing and these psychosocial problems occurring concurrently both in sickle cell disease patients and their caregivers (parents) is a phenomenon that can have negative impacts both on the victims and the family as a whole. Hence, this study suggests that patients should be seen by nurses and other health care provider in the context of their families holistically. Whenever a sickle cell disease child or mother is identified to have psychosocial problems the minimum of psychosocial assessment should include both sickle cell disease patients and their parents need to be assessed too. Therefore, nurses and policy makers should provide the necessary psychological care and support to these individuals in order to have a better success of the treatment/management of the affected people.


5.5 Recommendations

Based on the findings from the study, the following recommendations are therefore made:

  1. Government of various countries should strengthen the existing national health insurance as well as subsidizing the cost of sickle cell disease (SCD) care to alleviate the huge financial burden on the family.
  2. Regular psychosocial support should be available to alleviate caregivers and or family members’ burden.
  3. Social organizations i.e. National Sickle Cell Association and Sickle Cell Club should be encouraged so that sickle cell disease victims and their caregivers can share their feelings and counsel among one another.
  4. Promotion of neonatal screening genetic counseling and comprehensive public health education aiming at increasing community awareness on the burden and prevention of the disease.
  5. Routine haemoglobin genotype determination for adolescents before entering into marital relationships to offer a programmatic approach in reducing the high prevalence of the sickle cell gene and the attendant problems.
  6. Health Education on limitation of family size to reduce the risk of mothers from having additional sickle cell disease children.

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