Married and Unmarried Individual Perspectives on Sickle Cell Aneamia
Chapter One
STUDY OBJECTIVES
General Objective
To determine the knowledge, attitude and practice of married and unmarried people towards sickle cell prevention in faculty of basic medical science in Rivers State so as to improve screening of sickle cell to improve clinical care and survival of sickle cell clients and prevent sickle cell disease.
Specific Objectives
- To determine the knowledge of Married and unmarried Individual about sickle cell anaemia in faculty of basic medical science in Rivers
- To explore the attitude of Married and unmarried Individual about sickle cell anaemia in faculty of basic medical science in Rivers
- To determine the practice that health workers do in screening for sickle cell in Rivers
- To determine the factors associated with knowledge and practice of sickle cell anaemia prevention by Married and unmarried Individual in Rivers State.
CHAPTER TWO
LITERATURE REVIEW
Introduction
Sickle cell Disease is the most common haemoglobinopathy in the world. About 275,000 of the 330,000 babies born worldwide with haemoglobinopathies annually have SCD. Most children born with these conditions in developed countries survive with chronic illness due to universal new-born screening, prophylactic penicillin and better quality health care. Contrary to this, about 50-80% of infants born in Africa die before their 5th birthday (Liu et al., 2012).
Many developing countries with SCD are going through an epidemiologic transition due to improved nutrition, immunisation and infection control; therefore, the under-five mortality rates are expected to fall. This means there will be a cumulative increase in the number of SCD clients needing care hence straining the limited health care resources and services available in developing countries (Aygun and Odame, 2012).
In order to improve the outcomes of people living with SCD, there is need for SCD professionals, patients, families, and SCD organisations to target raising public awareness through education, coupled with other interventions such as sickle cell prevention.
Available literature provides information on knowledge, attitudes and practices of married and unmarried people towards sickle cell prevention.
Knowledge of Married and unmarried Individual about sickle cell anaemia
Health workers are expected to have knowledge on Sickle cell prevention according to the national sickle cell guidelines (in its approval stage) as stated;
The Nigeria Sickle Cell Disease guidelines define SCD as “a hereditary disease characterised by producing defective haemoglobin leading to sickle-shaped red blood cells.” It is chronic and leads to recurrent pain episodes (MoH, 2016a).
Signs and symptoms of Sickle cell disease
Clinical features of SCD include; recurrent painful episodes which are either acute (lasts hours to a few days) or chronic (lasts 3 to 6 months or more), jaundice of the eye due to haemolysis of sickle red blood cells, recurrent bacterial infections due to destruction of the spleen, hand and foot syndrome (dactylitis) in infants due to obstruction of blood flow by sickle cells, stroke due to lack of oxygen in the brain, failure to thrive due to lack of enough oxygen for normal body growth, priapism (involuntary painful sustained erection among males with SCD) which is minor (lasts less than 4 hours) or major (lasts longer than 4 hours), persistent ulcers due to lack of oxygen for wound healing, frontal bossing (prominent protruding forehead)due to enlargement of both frontal and facial bones (MoH, 2016a).
Babies less than 6 months do not develop the above symptoms even when they have SCD because of the presence of foetal haemoglobin which inhibits aggregation of haemoglobin S. Symptoms therefore develop after 5 to 6 months when foetal haemoglobin has reduced (MoH, 2016a). This means screening for SCD among infants is only expected after about 6 months of age in Nigeria.
Clinical Diagnosis of Sickle Cell Disease
A health worker should begin diagnosis of SCD immediately he or she suspects that a patient has SCD depending on: presenting complaints like jaundice, history of recurrent infections and pain, failure to thrive, family history of SCD, physical examinations like jaundice,
tenderness, splenomegaly and frontal bossing. Other differential diagnoses should also be made by the health worker (MoH, 2016a).
Laboratory Diagnosis of Sickle Cell Disease
Tests carried out aim at demonstrating abnormal haemoglobin S and they include; Hb electrophoresis (gold standard), sickling test (preliminary test), solubility test, blood film, and isoelectric focusing.
Referral flow in management of Sickle cell disease
Clients with SCD are managed are supposed to be managed from health centre II up to hospital level. Whenever clients present with conditions that cannot be managed at a particular level, they should be referred to the next health centre level. However, all complicated cases that cannot be managed at other health centres should be managed at the national referral hospital.
Prevention services
Prenatal screening and diagnosis
Mothers are encouraged to go with their partners for sickle cell prevention if they have not been screened before, so that the outcome of the expected child is predicted. Counselling is provided in case one or both of the partners have a trait or SCD.
Prenatal diagnosis should be done in case a mother comes to the health facility with unknown sickle cell status of the partner and he is found to have a trait. Couples with history of giving birth to children with SCD should also have prenatal diagnosis carried out. Results should be discussed with the couple and they should be given opportunity to make informed decisions.
Screening for Sickle cell
Free new born screening of children up to 2 years is carried out in over 300 health facilities country wide. Dried blood samples are processed at Nigeria National Health Laboratory services. Results are returned to health facilities and parents of babies with positive results are called and counselled. Results of babies with negative results are given during other activities such as immunisation.
Premarital/ Pre-conceptual screening
It has been found to be the best way to prevent and halt the progress of SCD. Here, couples intending to get married or have a child together are screened for the sickle cell gene before marriage or having a child. The couples are then given genetic counselling depending on the results from screening (MoH, 2016a).
Studies about knowledge of Married and unmarried Individual about sickle cell anaemia
A study conducted among community health workers in Nigeria indicated poor knowledge of sickle cell diagnosis in prenatal and neonatal periods. However, primary health care workers were found to have good knowledge about the nature of the disease (Adegoke et al., 2018).
A study carried out by Adeyemi among Nigerian female health workers revealed that doctors and nurses had a good knowledge of the complications of SCD in pregnancy as they had the most direct contact with the mothers. However, this knowledge did not translate into acceptance for termination of early pregnancies with SCD (Adeyemi, 2007).
In a study by Armeli et al. (2005) people from areas of high prevalence of sickle cell disease were more likely to be aware of it. In a study by Gomes et al. (2011) 66.6% of professional
health care workers were found to be aware of clinical manifestations of sickle cell disease. Clinical manifestations are used in screening for sickle cell disease.
A study carried out by Okwir and colleagues revealed that 52% of married and unmarried people from the East (Mbale and Sironko) knew SCD screening methods compared to their counterparts in the West (Mbarara and Ntungamo) where 50% of married and unmarried people knew SCD screening methods. The lack of skills of married and unmarried people in screening for SCD was taken to be the reason why most public health facilities did not screen for Sickle cell and why respondents had not screened and did not know their SCT status. The awareness about SCD in urban areas was higher and this was related to higher levels of education (tertiary) and exposure to televisions and newspapers unlike their rural counterparts with lower education (primary) and source of information was health visitors and radios (Okwi et al., 2009). A study by Jenerette et al. (2015) found that nurses and midwives were not able to recognise signs and symptoms of sickle cell disease due to limited knowledge.
CHAPTER THREE
RESEARCH METHODOLOGY
Study Design
The study was cross-sectional given that it involved taking a snapshot of the community to determine the knowledge, attitude and practice of married and unmarried people towards sickle cell prevention in faculty of basic medical science in Rivers State. Quantitative methods of data collection were used since structured questionnaires were available to determine knowledge and practice of married and unmarried people towards sickle cell prevention. Qualitative methods of data collection were used to explore the attitude of married and unmarried people and their practice towards sickle cell prevention in faculty of basic medical science in Rivers State.
Study Population
The study included health workers (Doctors, Clinical Officers, Nurses, Midwives, Laboratory Technicians, Medical Records officers) with direct contact with clients from public health facilities who were within Rivers State at the time of the study. This is because only health workers from public health facilities were trained by MoH on sickle cell disease (MOH, 2016b). Furthermore, there had been no evaluation of their knowledge retention of SCD.
CHAPTER FOUR
DATA ANALYSIS RESULTS
Characteristics of participants
Of the participants who responded, 116 (64.4%) were female, 113 (64.9%) were rural residents, 81 (49.4%) were aged 30 to 39 years, and 145 (81.9%) were married. By religion, 75 (41.9%) were Catholic, 70 (39.1%) were Anglican, 27 (15.1%) were Pentecostal and 7 (3.9%) were from other religions. By cadre, 78 (43.6%) were nurses, 40 (22.4%) were midwifes and 26 (14.5%) were doctors or clinical officers. Of the respondents, 135 (80.8%) belonged to the higher income level and 32 (19.2%) belonged to the lower income level. The average age of participants was 37.3 (SD 7.8).
CHAPTER FIVE
CONCLUSION AND RECOMMENDATIONS
Conclusion
Health workers in Rivers State had suboptimal knowledge about sickle cell prevention particularly about diagnosis of sickle cell in infancy and laboratory tests for diagnosis of sickle cell. The factors associated with knowledge were residence, income level and training on sickle cell prevention.
The attitude of married and unmarried people towards sickle cell prevention was positive as health workers cared and supported clients to screen for sickle cell; they took screening fully as their responsibility, believing it prevented transmission of sickle cell genes to others. They expressed concerns of limited knowledge about sickle cell prevention, inadequate supplies and equipment that mainly affected their attitude.
Two-thirds of married and unmarried people practiced sickle cell prevention mainly for children. However, premarital counselling and awareness campaigns were irregular and prenatal diagnosis was not carried out. Factors associated with sickle cell prevention practice were residence and knowledge about sickle cell prevention.
Recommendation
Health facility
Health workers should carry out income generating activities such as animal husbandry and commercial crop growing to improve their income. This will enable them access sources of information such as newspapers, radios, televisions, internet and phones thereby improving their knowledge on sickle cell prevention.
Health facility In-charges should plan for and conduct integrated outreaches in rural areas every month. This will improve sickle cell prevention practice of married and unmarried people.
Health facility In-charges should design weekly timetables for conducting continuous medical education at the health facility and awareness campaigns on sickle cell prevention in the community to encourage people to go for sickle cell prevention.
State Health Office
The State Health Officer should appoint a focal person at the State to head monitoring and supervision of sickle cell prevention activities by health workers within the State.
The State Focal Person for sickle cell prevention should plan and budget for funds for running of sickle cell prevention activities such as annual refresher training of married and unmarried people, continuous medical education and awareness campaigns on sickle cell prevention.
The State Health Office should carry out regular refresher training of married and unmarried people; at least once a year, especially those in rural areas on sickle cell prevention.
Procure sickle cell prevention equipment such as microscopes for Health Centre IIIs. This will improve attitude and practice of married and unmarried people towards sickle cell prevention.
Partner with private laboratories to subsidise cost of sickle cell prevention for adults to enable them access sickle cell prevention services.
Ministry of Health
The Ministry of Health should lobby for approval of the sickle cell guidelines so that it guides formulation of the sickle cell policy of Nigeria.
References
- ADEGOKE, S. A., AKINLOSOTU, M. A., ADEDIJI, O. B., OYELAMI, O. A., ADEODU, O. O. & ADEKILE, A. D. 2018 Sickle cell disease in southwestern Nigeria: assessment of knowledge of primary health care workers and available facilities. Trans R Soc Trop Med Hyg, 112, 81-87.
- ADEYEMI, A. S. 2007. Knowledge_attitude of female health workers towards prenatal diagnosis of SCD.
- ADEYEMO, A., AMODU, O., EKURE, E. & OMOTADE, O. 2018. Medical genetics and genomic medicine in Nigeria.
- ALEXANDER, S., BELMAR-GEORGE, S., EUGENE, A. & ELIAS, V. 2017. Knowledge of and attitudes toward heel prick screening for sickle cell disease in Saint Lucia. Rev Panam Salud Publica, 41, e70.
- ALHAMDAN, N., ALMAZROU, Y., ALSWAIDI, F. & CHOUDHRY, A. 2007. Premarital screening for thalassemia and sickle cell disease in Saudi Arabia. 9.
- ARMELI, C., ROBBINS, S. J. & EUNPU, D. 2005. Comparing knowledge of β-thalassemia in samples of Italians, Italian-Americans, and non-Italian-Americans. Journal of genetic counseling, 14, 365- 376.
- AYGUN, B. & ODAME, I. 2012. A global perspective on sickle cell disease. Pediatr Blood Cancer, 59, 386-90.
- BANDURA, A. 1986. Social foundations of thought and action. Englewood Cliffs, NJ, 1986.
- BARROS, A. J. & HIRAKATA, V. N. 2003. Alternatives for logistic regression in cross-sectional studies: an empirical comparison of models that directly estimate the prevalence ratio. BMC medical research methodology, 3, 21.
- CABANA, M. D., RAND., C. S., POWE., N. R., WU., A. W., WILSON., M. H., ABBOUD., P.-A. C. & HAYA R.
- RUBIN, M. 1999. Why dont Physicians follow clinical practice guidelines? A framework for improvement.
- CDC 2017. factsheet_scicklecell_status. Get screened to know your Sickle Cell Status.
- CHAWLA, S., SINGH, R. K., LAKKAKULA, B. & VADLAMUDI, R. R. 2017. Attitudes and beliefs among high- and low-risk population groups towards beta-thalassemia prevention: a cross-sectional descriptive study from India. J Community Genet, 8, 159-166.
- CPHL 2017. SCD screening central public health facilities.
- DUROSINMI, M., ODEBIYI, A., AKINOLA, N., ADEDIRAN, L., AKEN’OVA, Y., OKUNADE, M., HALIM, N.,
- ONWUKEME, K., OLATUNJI, P. & ADEGOROYE, D. 1997. Acceptability of prenatal diagnosis of sickle cell anaemia by a sample of the Nigerian population. African journal of medicine and medical sciences, 26, 55-58.
- GALADANCI, N., WUDIL, B. J., BALOGUN, T. M., OGUNRINDE, G. O., AKINSULIE, A., HASAN-HANGA, F., MOHAMMED, A. S., KEHINDE, M. O., OLANIYI, J. A., DIAKU-AKINWUMI, I. N., BROWN, B. J., ADELEKE, S., NNODU, O. E., EMODI, I., AHMED, S., OSEGBUE, A. O., AKINOLA, N., OPARA, H.
- , ADEGOKE, S. A., ANEKE, J. & ADEKILE, A. D. 2014. Current sickle cell disease management practices in Int Health, 6, 23-8.
- GBENEOL, P. K., BRISIBE, S. F. & ORDINIOHA, B. 2015. Knowledge, attitude and uptake of premarital screening for sickle trait among married couples in a semi-urban community in South-South Nigeria. European Journal of preventive medicine, 3, 49-54.
- GOMES, L., VIEIRA, M., REIS, T., THIAGO LA BARBOSA, T. & CALDEIRA, A. 2011. Knowledge of family
- health program practitioners in Brazil about sickle cell disease: a descriptive, cross-sectional study. BMC Family Practice.
- GOMES, L. M., ANDRADE BARBOSA, T. L., VIEIRA, L. J., CASTRO, K. P., CALDEIRA, A. P., TORRES, H. C.
- & VIANA, M. B. 2017. Effectiveness of an educational programme about sickle cell disease in the form of active methodologies among community health agents and nursing technicians of primary care in Minas Gerais, Brazil. Paediatr Int Child Health, 37, 56-62.