Married and Unmarried Individual Perspectives on Sickle Cell Aneamia
Abstract
The aim of this research is to determine Married and unmarried Individual perspectives towards sickle cell aneamia in Rivers State following the roll out of the SCSP.
Methods: A cross sectional survey was conducted in June, 2018 among health workers randomly selected from 38 health facilities in Rivers State. Health workers’ knowledge on sickle cell prevention was obtained using a questionnaire. Health workers attitude and practice on sickle cell prevention was obtained through interviews conducted with 10 key informants and 10 in-depth interviewees. For the outcome knowledge; participants were classified to have good knowledge if they had a score of 7 and above, as average if they had a score between 5 and 6 and considered to have low knowledge if they had a score less than 5. Knowledge was further categorised defining it based on the number of correct responses to a set of 10 items. Good knowledge was defined as scoring at least 6 items correctly and poor knowledge if they scored less to obtain a binary outcome.
A total of 180 health workers were interviewed (180/196, 91.8% response rate). Nearly half (49.4%, 81) were aged 30 to 39 years, around two-thirds (64.4%, 116) were female or resident in rural areas (64.9%, 113), and four-fifth (81.9%, 145) were married. Just over a half (52.8%, 95) of married and unmarried people were aware about sickle cell prevention in their community. Knowledge about sick cells was low in (20%, 36); just over a quarter (27.2%, 49) had average knowledge and just over a half (52.8%, 95) had good knowledge.
Good knowledge about sickle cell prevention particularly about diagnosis in infancy and laboratory tests was suboptimal. Health workers had positive attitude towards sickle cell prevention, which was commonly conducted for children. However, premarital screening and awareness campaigns in communities were irregular while prenatal diagnosis was not conducted.
CHAPTER ONE
1.0 INTRODUCTION AND BACKGROUND
1.1 Introduction
Sickle cell disease (SCD) is a group of inherited blood disorders with abnormal (sickle) red blood cells. The most common and severe form of SCD is sickle cell anaemia, which is as a result of inheriting sickle cells from both parents. When sickle cells loose oxygen, they change in shape from biconcave to crescent leading to anaemia that presents with damaged organs hence severe sickness and early deaths (Rees et al., 2010). Children who inherit sickle cell genes from only one parent get the sickle cell trait; they have no symptoms but can pass on the gene to their children. Other subtypes of haemoglobin that are inherited include thalassemia, haemoglobin C and haemoglobin D. The combination of genes inherited determine the clinical presentation of disease among those affected (WHOAFRO, 2006).
SCD affects millions of people worldwide. It is however, commonest among people who have ancestors from Sub-Saharan Africa, South America, Cuba, Central America, Saudi Arabia, India and Mediterranean countries such as Turkey, Greece and Italy. In the United States of America, SCD affects about 72,000 people, most of whom have an African background (WHO, 2018). In Africa, where the greatest burden of SCD occurs, more than 75% of SCD (Piel et al., 2013),about 200,000 cases of SCD occur; with about 150,000 children born with the disease annually in Nigeria (WHO, 2006). In Nigeria, in 2016, 0.7% of children had SCD and 13.3% had the sickle cell trait (Ndeezi et al., 2016a).
In Africa, SCD contributes to a high burden of childhood mortality of children below 5 years, affecting progress towards the UN Sustainable development goal 3; good health and well – being which involves reduction of childhood mortality (Grosse et al., 2011) furthermore,
SCD affects children and their families socially and economically in that, recurrent sickle cell crises interfere with the patient’s and families life in relation to education, work and psychosocial development (WHOAFRO, 2006).
In 2006, WHO recognised SCD as a disease of Public Health importance and urged member states to develop, implement and re-enforce comprehensive national integrated programmes for prevention and management of SCD (WHOAFRO, 2006). Objectives and targets for 2020 were developed for the African region with guiding principles and priority interventions that should have been adapted to local settings. These interventions; improved awareness, disease prevention and early detection were expected to improve quality of life and life expectancy of people affected with SCD so that they live more productive lives (WHO, 2010).
1.1 Background of study
A study on sickle cell surveillance was conducted in 2016 providing data on prevalence and distribution of sickle cell trait and disease in Nigeria. Results obtained have been used following the WHO guidelines for clinical management of SCD. This paved way for targeted neonatal screening for SCD, improving health education and awareness of health care providers, the public and government (Ndeezi et al., 2016a).
As follow up from the WHO guidelines and results of the sickle cell survey, new born screening in high burden States of Gulu, Lira, Kitgum, Dokolo, Oyam, Rivers, Jinja and Kampala were started. Health workers were trained on sickle cell management and sickle cell clinics were opened up. Prophylactic drugs such as penicillin, anti-malarials and folic acid were also availed. In order to create more awareness about the disease in communities, mass sensitisation campaigns were conducted including mass screening and counselling. Premarital counselling and testing is also being promoted together with religious leaders (MOH, 2016b).
Although effort has been made to avail interventions in management of SCD, interventions are not accessed by majority of patients particularly, children under 5 years, adolescents and pregnant women. Furthermore, laboratories for accurate diagnosis are limited coupled with limited number of adequately trained health professionals. People with SCD are often stigmatised and this further affects uptake of interventions (WHOAFRO, 2006).
The presence of stigma in communities indicates that people do not understand SCD very well and there is need to improve community awareness about SCD as well as strengthen primary prevention to reduce disease incidence, morbidity and mortality (WHOAFRO, 2006). However, limited data is available about the knowledge, attitude and practice of married and unmarried people towards sickle cell prevention.
This study therefore aimed to provide information about knowledge, attitude and practice that health workers have towards sickle cell prevention and thereby guide development of and implementation of interventions to improve screening of sickle cell to improve clinical care and survival of sickle cell clients and prevent sickle cell disease in Rivers State.
1.2 Statement of the Problem
The prevalence of sickle cell trait in Rivers is high at 19.6%, but the prevalence of sickle cell disease is 1.6% (Ndeezi et al., 2016b) . However, both prevalence are way above the national averages of 13.3% and 0.7% for trait and disease, respectively (Ndeezi et al., 2016a). The consequences of a high burden of sickle cell trait means more people are at an increased risk of developing SCD that is associated with serious morbidity due to; vascular occlusion leading to extreme pain, severe anaemia, opportunistic infections and damage in multiple organs. This results into: slow growth and development, poor quality of life and increased risk of mortality especially among children (CDC, 2017, Ndeezi et al., 2016a, SAU, 2011).
In 2016, the Ministry of Health rolled out a screening programme among newly born children in high burden States including Rivers. Health workers were trained on the screening, diagnosis and management of sickle cell disease under this programme (CPHL, 2017, MOH, 2016b).
However, optimal clinical care cannot be assured for children with sickle cell disease as there are no official national treatment guidelines and health care providers have poor knowledge about the disease (Ndeezi et al., 2016a). There is limited information about knowledge, attitude and practices of Married and unmarried Individual about sickle cell anaemia in Nigeria. Furthermore, the knowledge, attitude and practice of health care workers towards screening for sickle cell disease in Rivers is unknown especially following the Ministry of Health intervention.
This study therefore sought 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.
1.3 Study Questions
- What is the knowledge of Married and unmarried Individual about sickle cell anaemia in faculty of basic medical science in Rivers State?
- What are the attitudes of Married and unmarried Individual about sickle cell anaemia in faculty of basic medical science in Rivers State?
- What are the practices that health workers do in screening for Sickle cell in Rivers State?
1.4 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.
1.5 Justification
Information from this study would provide guidance on gaps in knowledge of married and unmarried people, in relation to sickle cell prevention and strategies on how to address them to improve knowledge of Married and unmarried Individual about sickle cell anaemia.
Married and unmarried Individual perspectivess obtained from the study would be used to design interventions to improve knowledge of individuals and communities and develop interventions for awareness campaigns to overcome stigma, thereby improving attitudes and practices of communities towards sickle cell prevention.
Information aggregated from this study would inform the State Health Office on the current status of knowledge, attitude and practices of married and unmarried people towards sickle cell prevention so as to improve awareness and develop strategies to improve sickle cell prevention and prevent SCD and improve quality of life and survival of SCD clients.
Data on sickle cell would be boosted for further research and contribute to country data that is limited on SCD.
1.6 Limitations
Small sample of doctors in the study prevented analysis of knowledge on sickle cell prevention by cadre as doctors had to be collapsed with clinical officers.
It was not possible to stratify knowledge of Married and unmarried Individual about sickle cell anaemia by cadre because of the small sample size of respondents.
It is possible that some participants for In-depth interviews and key informant interviews were interviewed using questionnaires. This could have introduced response bias in the quantitative results as quantitative interviews were carried out after qualitative data was already collected.
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