Knowledge and Misconception of Sickle Cell Disorder Among a Cross-Section of Nigerian
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KNOWLEDGE AND MISCONCEPTION OF SICKLE CELL DISORDER AMONG A CROSS-SECTION OF NIGERIAN UNDERGRADUATES
By
1Agoha, B.C.E, 2Igbokwe, D.O and 3Okiti, O., 4Idoko, J.O., & 5Elegbeleye, A. Covenant University Ota, Ogun State South-West Nigeria.
1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 2
KNOWLEDGE AND MISCONCEPTION OF SICKLE CELL DISORDER AMONG A CROSS-SECTION OF NIGERIAN UNDERGRADUATES
Abstract
This was a cross sectional study designed to investigate how much misconception and knowledge about sickle cell disorder (SCD) among University Undergraduates. 138 female and 79 male (36 %) Undergraduate participants drawn from a private Christian University completed a questionnaire on knowledge and misconception of SCD developed by the authors. Participants ranged between 15 and 23 years in age (= 19.25 years, SD= 1.72). result obtained from the data analysed in simple percentages indicate that although many of the participants had heard SCD mentioned by their parents, school, or television, the lacked clear knowledge of the disorder and still held a variety of misconceptions regarding the disorder. The implication of this for the war against SCD is phenomenal. More effort in public education through the television and widespread intervention at the community level would be required to stem SCD in developing African countries.
Key Words: Sickle cell disorder, Misconception, Nigerian Undergraduates
INTRODUCTION
Sickle cell disease (SCD), also known as sickle cell anaemia or sickle cell disorder is one of the most widespread inherited lethal diseases in the world; and was first described in 1910 (Herrik, 1910). It is a common genetic disorder caused by mutations in both copies of the β-globin gene, a major subunit of haemoglobin (Hb) which damages and deforms red blood cells. The clinical picture of the disease usually emerges after four months of age with highly phenotypically variable disease (Bunn, 1997). SCD affects millions of people worldwide. About
300, 000 children globally are born yearly with the disease (Okpala, Thomas, Westerdale, Jegede, Raj, Daley, &
Abbs, 2002), whose origin is traceable to the people of Sub Saharan-Africa, Mediterranean, Middle Eastern, and
Indian descent (Luzzatto, 1981). Amongst these groups, people of Sub-Saharan African are known to have the highest occurrence (Gubis, Ferster, Kentos, N’Gay Munungi, Cotton, & Vertonge, 2005; Creary, 2007). A plethora of major clinical symptoms are associated with SCD. Some of these include chronic pains, acute anaemia, infection, and joint swelling and other idiosyncratic complications (Serjeant & Serjeant, 2001). These symptoms often require sufferers go to a variety of Specialists for management. It has been estimated that up to 90% of patients are admitted to hospitals at one time or the other for episodes of pain (Brozovic, Davies, & Brownell, 1987).
Individuals with SCD are also at risk of academic failure, as well as psychosocial maladjustment (Brown,
Armstrong, & Eckman, 1993).
Approximately three quarters of all new SCD births and 7.0% of the world’s carrier population of the SCD gene are found in Africa (Weatherall, 2001). SCD is a key health problem in Nigeria, the most populous black nation in Africa, with a population of over 140 million. It is estimated that SCD affects about 2% of the general 1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 3 population in Nigeria, which is has the highest incidence of SCD patients than any other country in the world, with over 24% of the population being carriers of the muted gene (World Health Organization (WHO, 2006). The life expectancy of patients with SCD is reduced by 25-30 years compared to that of the general population (Platt,
Brambilla, Rosse, Milner, Castro, & Klug, 1994).
Over the years progress in scientific breakthrough has resulted to an increasing number of SCD Patients living longer, with fewer incidents of painful crises, and enhanced improved quality of lives. The most scientific breakthrough is the use of a drug called hydroxyurea which has reduced mortality dramatically in developed countries. Despite these scientific advances and breakthrough in ensuring SCD patients live longer, these advances and its applicability are still very scanty in poorer countries of the world. Patients with SCD are faced with the difficult challenges of having access to drugs and qualified doctors to provide them the latest advancement in the management of their condition.
The epidemiology of SCD has made it a global disease of public health importance that has been recognized by the WHO (Makano, Williams & Marsch, 2007). In fact, the UN-WHO resolution (22 December,
2008) declaring 19 June the World Day for Sickle Cell and Thalassemia underscores the global importance of the disorder. Mabayoje (1956) highlights the burden of the disorder is this way:
‘‘Sickle cell anaemia is a major disease of West Africa. It is a cause of distress in many families. It therefore deserves much better recognition than it gets at present. It should be treated as a major disease in schools of tropical medicine, textbooks and in all medical schools in tropical Africa.’’ (pp. 196).
SCD is a serious disorder that needs close monitoring in the population (Michael, 1993). Its management is burdensome on sufferers, and it has been demonstrated to affect psychological well-being (Bamisaiye, Bakare, &
Olatawura, 1974; Ohaeri, Sokunbi, & Akinlade, 1995). The Nigerian society, and by extension African societies, have an aberrant attitude towards people with various forms of illnesses in the form of stigma, rejection, and disrespect. It is thought that illnesses like SCD are caused by witchcraft, magical spells, curses, or water spirits.
These misconceptions, according to Ugwuegbu (1994), may lead to negative attitudes towards SCD patients.
SCD symptomology compares in some respects with the ogbanje (Igbo) or Abiku (Yoruba) phenomenon
(Nzewi, 2001) expressed in Wole Soyinka's (Soyinka, 1967) and J.P Clarke's (Clarke, 1967) Abiku. In the preternatural the Abiku is 'ageless' and lives on the baobab and other big trees from which s/he selects a mother from among humans and enter a continuous cycle of birth, death, and rebirth to the same woman, preventing the birth of
1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 4 more children to the home. Clarke expresses it thus: '...Tired, her milk going sour, where many more mouths gladden the heart'. The Abiku's intention is assumed to be the punishment of the particular family that has been chosen. Thus, the following line written by Soyinka: '...Must I weep for goats and cowries, for palm oil and sprinkled ash? Mothers! I'll be the suppliant snake coiled on the doorstep, yours the killing cry’. Moreover, the child is thought to have the ability to either stay alive or die, and therefore are usually urged to 'step in and stay', and given reasons and promises to do so.
The challenges posed by this disorder have inspired many studies (Kulkarni, 2007; Mitchell, 2007; Tunde-
Ayinmode & Adelekan, 2005; Anie, 2005; and Creary, 2007 etc.) undertaken to ascertain its impact on sufferers, their families, and the society. Some other studies have concentrated on determining what possible relationships exist between SCD and the ogbanje/abiku phenomenon. In a study of 100 children identified as ogbanje, Nzewi
(2001) found that the ogbanje was considered revenge-driven, chronically ill and 'coming and going'. The study also found using haemoglobin analysis that 70 of the 100 children were sickled. Death-related names in 68% of the families suggested a positive history of infant mortality, making the Author to conclude that ogbanje was misdiagnosed SCD. This view seems to re-echo Onwubalili (1983) who argued that most ogbanje/abiku children died of plasmodium falciparum transmitted by mosquitoes, which are prevalent in tropical southern Nigeria.
Although this malaria-SCD paradigm of ogbanje sounds plausible, not all scholars assent to its validity. For instance, Asakitipi (2008) points out the inadequacy of existing models of natural sciences in explaining some aspects of the ogbanje phenomenon. He argued that whereas the ogbanje/abiku may be explained in terms of SCD, there was no way of understanding how marks and incisions made posthumously on suspected ogbanje children re- appeared on their ‘reincarnates’, and that the notion of existence of what may be genuinely described as ogbanje be not dismissed.
Negative attitudes to and stigma against people living with sickle cell disorder, emanate from a lack of knowledge of the nature of the disorder, and add up to the burden imposed on Patients and their families. They also influence the health-seeking behaviour of patients and their family members (Asakitipi, 2008). Families of SCD children may rather seek spiritual solution than medical counselling/intervention, especially in the rural areas.
Although Onwubalili (1983) did suggest the decrease in belief in the ogbanje phenomenon due to advances in the medical science, supportive data to that effect is still lacking. To effectively manage, control, and prevent SCD the public needs must understand it properly.
1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 5
The objective of this study therefore is to determine the general knowledge and misconception of SCD by
University students. The level of awareness of aetiological and possible interventions in SCD would be investigated in the study. Misconceptions, wrong attribution of causes and treatment would be investigated in the study. The study would similarly highlight areas of inadequate knowledge. It is hoped that the findings from this study would encourage the development of promotional and educational approaches that would enhance the understanding, management, and prevention of SCD.
METHOD
The study participants included 79 male (36 %) and 138 female Undergraduate students drawn from a private Christian University in South-West Nigeria. They ranged between ranged between 15 and 23 years in age (=
19.25 years, SD= 1.72).
MEASURE
Data was collected using a 22-item SCD knowledge and misconception questionnaire (SKQ) constructed by the Researchers. The items on the instrument addressed four major areas of knowledge and misconception of
SCD. These are aetiology and diagnosis, concept, prevention and diagnosis, and intervention during crisis. Items 1 and 2 sought for information regarding awareness of the disorder called sickle cell disorder. For instance, item 1 reads: ‘Have you heard of Sickle Cell Disorder [SCD]? Six items (3-8) were concerned with knowledge about aetiology e.g. ‘cancer of the red blood cells causes SCD’, ‘evil spirit or spiritual possession causes SCD’; while items 9-12 measured misconceptions regarding the communicability of the disorder. The remaining items gauged knowledge of major symptoms of SCD, available intervention and prevention strategies, and one item (18) ‘can
SCD patients marry and bear children’ measured stigma.
Design/Statistics
The study was a cross-sectional survey, and the stratified quota sampling technique was used to draw participants from the six schools in the University. The data obtained was analysed as percentages using the SPSS-XVII statistical package.
1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 6
RESULT
Two hundred and seventeen (217) returned questionnaires were satisfactorily completed and analysed. The results are presented below.
Table 1:
General information about SCD
Question Categories Males Females Total (% =100) (%=100) (%=100)
Have you heard of Sickle Yes 79(100) 128 (92.8) 207(95.4) Cell Disorder (SCD)? No 0(0) 10 (7.2) 10 (4.6)
If yes, how did you Parents 59(74.7) 0(0) 59 (27.2) Know about it? Friends 17(21.5) 8(13.0) 35 (16.1) TV 0(0) 52(37.7) 52 (24.0) Newspaper 0(0) 9 (6.5) 9(4.1) Radio 0(0) 3(2.2) 3(1.4) School 0(0) 31(22.5) 31(14.3) Internet 0(0) 5(3.6) 5 (2.3) Cannot Remember 0(0) 8(5.8) 8 (3.7) Parents and friends 3(3.8) 0 (0) 3(1.4) School and TV 0(0) 12(8.7) 12(5.5)
Do you know what Yes 79(100) 59(42.8) 138(63.6) causes SCD? No 0(0) 79(57.2) 79(36.4)
How is SCD Sex 3(3.8) 0(0) 3 (1.4) Transmitted? Blood 34(43.0) 23(16.7) 57(26.3) Saliva 0(0) 28(20.3) 28(12.9) Food 0(0) 0(0) 0 (0) Mosquito bite 0(0) 0(0) 0 (0) Sharing of needle 0(0) 0(0) 0 (0) Mother to child 42(53.2) 21(15.2) 63(29.0) Others 0(0) 21(15.2) 21(9.7) Didn’t indicate 0(0) 45(32.6) 45(20.7)
How can SCD be cured? Blood transfusion 24(30.4) 0 (0) 24(11.1) Medication 19(24.1) 0 (0) 19(8.8) Prayers 36(45.6) 64 (46.4) 100(46.1) None of the above 0(0) 55 (39.9) 55(25.3) All of the above 0(0) 19 (13.8) 19(8.8)
In what ethnic population Europeans 27(34.2) 0(0) 27 (12.4) is SCD most common? Asians 1(26.6) 0 (0) 21(9.7) Africans 41(39.2) 114 (82.6) 145(66.8) North Americans 0(0) 17(12.3) 17(7.8) Didn’t Indicate 0(0) 7 (5.1) 7(3.2)
The table above is a display of participants’ general awareness of sickle cell disorder. Only 10 female participants, representing 4.6% of the female population had never heard of sickle cell disorder. Fifty-nine respondents (27.2 %) were informed about SCD through parental sources, and thirty-five (16.1 %) from friends. The mass media accounted for 31.8 % of the general awareness of SCD. Fifty-two (24.0 %) of these cases were 1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 7 attributed to television, nine (4.1 %) to newspaper, and five (2.3 %) to the internet. Thirty-one participants (22.5 %) got their information from school, three (3.8 %) from both the school and friends, and twelve (5.5 %) representing
8.7 % of female participants obtained information from both school and TV, while about 5% cannot remember their source of knowledge of the disorder. Over seventy per cent of participants thought that prevalence of the disorder was highest in African populations.
Only one hundred and thirty-eight (i.e. 63.4 %) participants claimed knowledge of the causes of SCD. The remaining 36.6 % who reported lack of knowledge on aetiology were all female. Fifty-seven (26.3 %) participants believed that SCD was transmitted through blood, while sixty-three (29.0%) thought it was transmitted from mother to child. Forty-five female participants, representing 20.7 per cent of all participants did not indicate. In addition, twenty-one female participants i.e. 9.7 per cent of the participants indicated ‘other’ means of transmission, and 28
(12.9 %) female participants believed that SCD was transmitted through saliva and sex.
A hundred, 46.1 %, of participant’s believed that SCD can be cured through prayers, 24 (11.1 %) through blood transfusion, and nineteen male participants, accounting for 8.8 % of participants, believed that SCD can be cured through medication. Fifty-five (25.3 %) participants thought that SCD cannot be cured through any of the above means; but about 9 per cent believed SCD can be cured through all of the means.
Table 2: SCD crises trigger and intervention Question Categories Males Female s Total (% =100) (%=100) (%=100)
Which of the following Cold 36(45.6) 0(0) 36(16.6) Do you think could Stress 43(54.4) 100(72.5) 143(65.9) Trigger crisis on SCD Dehydration 0(0) 25 (18.1) 25(11.5) Patients? Food 0(0) 13(9.4) 13(6.0)
When an SCD patient massage the swollen part 26(32.9) 0 (0) 26(12.0) Is in crisis what is the and take the person to the Best thing to do? Nearest health centre
Put a spoon in his/her mouth 24(30.4) 0(0) 24(11.1) and take the person to the Nearest health centre
Do not let his/her saliva touch 5(6.3) 0(0) 5(2.3) you and take the person to the Nearest health centre
Get the attention of other 24(30.4) 3(2.2) 27(12.4) People and take the person to To the Nearest health centre
Ensure the person takes 0(0) 109 (79.0) 109 (50.2) his/her medication and take the person to the Nearest health centre
1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 8
Don’t know 0(0) 26(18.8) 26(12.0) We can see from table 2 that about 66 per cent of the respondents thought that stress could trigger crisis in
SCD Patients. An additional 45.6 per cent of the male i.e. 43 participants also believed that cold could trigger crisis in SCD. Twenty-five female participants indicated that dehydration could induce crisis, while another thirteen of them thought that food could trigger SCD crisis. Only 50.2 per cent of respondents thought that under crisis an SCD
Patient should be given medicine before being taken to the nearest health centre, 12 per cent had no idea what should be done, and 11.1 per cent said a spoon should be put in his/her mouth before being taken to the nearest health centre. Thus, over 80 per cent of the respondents evinced lack of accurate knowledge of how best to assist someone in SCD crisis.
Table 3:
Knowledge and misconceptions of SCD prevention and diagnosis
Question Categories Males Female s Total (% =100) (%=100) (%=100)
How can SCD be Awareness of genotype 79 (100) 73(52.9) 152(70.0) Prevented? Consumption of healthy diet 0(0) 0(0) 0(0) Blood transfusion 0(0) 25(18.1) 25(11.5) Herbal remedy 0(0) 2(1.4) 2(0.9) Prayers 0(0) 11(8.0) 11(5.1) Don’t know 0(0) 27(19.6) 27(12.4)
What are some of a. Tiredness 45(57.0) 0(0) 45(20.7) the clinical symptoms b. Retarded growth 30(38.0) 0(0) 30(13.8) associated with the c. Early death 4(5.1) 16(11.6) 20 (9.2) disorder? (You may tick d. Pains 0(0) 38(27.5) 38(17.5) more than one option) e. Fainting 0(0) 14(10.1) 14(6.5) a, b, c & d 0(0) 49(35.5) 49(22.6) c, d & e. 0(0) 16(11.6) 16(7.4) Don’t know 0(0) 5(11.6) 5(2.3)
How is SCD diagnosed? Blood test 79(100) 103(74.6) 182(83.9) Saliva examination 0(0) 6(4.3) 6(2.8) Mental assessment 0(0) 5(3.6) 5(2.3) Weight Loss Examination 0(0) 3(2.2) 3(1.4) Don’t know 0(0) 21(15.2) 21(9.7)
Participants demonstrated good knowledge about the means of prevention and diagnosis; Seventy 70 per cent of them believed that SCD can be prevented by awareness of genotype, and 84 per cent said blood test was required for diagnosis. But opinion as regarding the symptoms of SCD was quite diverse. Details are presented on table 3 above.
1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 9
DISCUSSION
There seems to be a general awareness of the sickle cell disorder among the study participants. Only ten of them, all of whom were female, claimed absolute ignorance of the disorder. This cannot be said to represent gender difference in SCD awareness as there were more female than male participants in the study. However, the existence of college students who are yet to hear about sickle cell disorder suggests that misconception may be high in the general population with so many illiterate persons. It is also worthy of note that the 36.6 per cent and the 45 participants, representing 20.7 per cent, who reported lack of knowledge of the cause of SCD were all female.
Female participants also evinced greater lack of knowledge of how SCD is diagnosed. This can be seen on table 3 where only 76.6 per cent of them accurately identified that blood test is carried out to diagnose SCD, compared with a 100 per cent of male participants. Moreover, a majority of participants accepted that the disorder is transmittable
Only 59 per cent agreed that inherited haemoglobin defect cause SCD; whereas over 60 per cent did not know whether or not cancer of the blood cell causes SCD, and 35 per cent wrongfully attributed causation to infection of the red blood corpuscles, and another 20 per cent to mental illness. Impliedly, some of the about 63.6 per cent of respondents who claimed knowledge of cause of SCD were ill informed.
The foregoing implies a high level of general misconception and lack of knowledge about sickle cell disorder. The findings are in agreement with earlier Nigerian studies indicating paucity of knowledge about cause of
SCD. This is somewhat worrisome given that majority of the participants in this study came from the middle, and high income urban-dwelling families, in which at least one of the parents had University education. Contrary to some other studies (e.g. Nzewi, 2001) only 7 per cent of our participants attributed sickle cell disorder to demonic/supernatural causation. There also was a considerable level of awareness of the high prevalence of the disorder in the African continent. The low attribution of SCD to supernatural causes by our participants was probably do to access to information from sources like the TV, internet and so on that are not readily available in the rural populace. Besides, the Christian worldview espoused to by the University from which the sample participants were drawn may have contributed. Typically, Christians do not believe in reincarnation on which the Nigerian concept of ogbanje rests. This is further reflected in the number of those who believe the SCD can be cured through prayers.
It is interesting that only about half the participants said they could recognize patients living with SCD at a glance, probably because they had seen an SCD patient in crisis. Many of our respondents thought that SCD was curable through a variety of means that included herbal remedies, prayers, nutrition etc. They also believed it was non-communicable, could be triggered by stress, and is not associated it with early death. These beliefs may
1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 10 mitigate stigmatisation, as evidenced in the overwhelming (over 70%) of participants that SCD patients could marry and bear children. They may also impede the development of positive health habits aimed at combating the disorder; young people may not see the need to undertake genotype screening before marriage if they think SCD is not life- threatening, and that it could be cured.
The responses of participants in this study also suggest that a lot of people are likely to seek help from prayer houses and other unorthodox places rather than from Western trained Practitioners. We think therefore that to win the battle against SCD widespread community intervention strategy is imperative. Television and other media programmes may be useful for promoting accurate knowledge of SCD. It may also be beneficial to include SCD as a topic in the integrated science and social studies books of our primary and secondary schools.
Conclusion
Although adequate awareness of SCD abound, this awareness does not seem to translate to meaningful knowledge that is useful for preventing SCD. The family, school, and religious institutions appear to be important in shaping peoples conception of SCD. There is therefore the need for specific intervention geared towards promoting adequate knowledge about the disorder, and attitude change at different levels of the community.
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1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota. 12
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1 & 2 Department of Psychology, Covenant University Ota. 3Department of Sociology and Anthropology, Covenant University Ota.