Knowledge and awareness of personal sickle cell genotype among parents of children with sickle cell disease in southeast Nigeria

Ezenwosu, Osita U; Chukwu, BF; Ikefuna, AN; Hunt, Aaron T.; Keane, James R.; Emodi, IJ; Ezeanolue, Echezona E.

doi:10.1007/s12687-015-0225-5

Cited by 9 publications

(7 citation statements)

References 10 publications

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“…Our finding of very low awareness of individual haemoglobin genotype status among participants agreed with previous studies from Northern Nigeria, [39,40] but was in contrast with high level of awareness found in Southern Nigeria. [41,42] High acceptability of personal screening for haemoglobin genotype among the participants in this study was in keeping with earlier studies in Nigeria [39,43] though poor participation in screening program has also been documented [44].…”

Section: Discussionsupporting

confidence: 87%

Community based screening for sickle haemoglobin among pregnant women in Benue State, Nigeria: I-Care-to-Know, a Healthy Beginning Initiative

Ezenwosu

Itanyi

Nnodu

et al. 2021

BMC Pregnancy Childbirth

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Background Haemoglobin genotype screening at prenatal care offers women an opportunity to be aware of their genotype, receive education on sickle cell disease (SCD) and may increase maternal demand for SCD newborn screening. In developed countries, most pregnant women who access prenatal care and deliver at the hospital receive haemoglobin genotype screening. In settings with low prenatal care attendance and low hospital deliveries, community-based screening may provide similar opportunity for pregnant women. We assessed the feasibility and acceptability of integrating haemoglobin genotype screening into an existing community-based HIV program. Methods Onsite community-based integrated testing for HIV, hepatitis B virus and haemoglobin electrophoresis, were conducted for pregnant women and their male partners. Community Health Advisors implementing the NIH and PEPFAR-supported Healthy Beginning Initiative (HBI) program provided education on SCD, collected blood sample for haemoglobin electrophoresis and provided test results to participants enrolled into the HBI program. We concurrently conducted a cross-sectional study using a pretested, semi-structured, interviewer administered questionnaire to collect demographic data and assess awareness of individual haemoglobin “genotype” among HBI pregnant women participants. Results In this study, 99.9% (10,167/10,168) of pregnant women who received education on SCD accepted and completed the survey, had blood drawn for haemoglobin electrophoresis and received their results. A majority of participating pregnant women (97.0%) were not aware of their haemoglobin “genotype”. Among the participants who were incorrect about their haemoglobin “genotype”, 41.1% (23/56) of women who reported their haemoglobin “genotype” as AA were actually AS. The odds of haemoglobin “genotype” awareness was higher among participants who were in younger age group, completed tertiary education, had less number of pregnancies, and attended antenatal care. Overall prevalence of sickle cell trait (AS) was 18.7%. Conclusions It is feasible to integrate haemoglobin “genotype” testing into an existing community-based maternal-child program. Most pregnant women who were unaware of their haemoglobin “genotype” accepted and had haemoglobin genotype testing, and received their test results. Increasing parental awareness of their own haemoglobin “genotype” could increase their likelihood of accepting newborn screening for SCD.

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Section: Discussionsupporting

confidence: 87%

Community based screening for sickle haemoglobin among pregnant women in Benue State, Nigeria: I-Care-to-Know, a Healthy Beginning Initiative

Ezenwosu

Itanyi

Nnodu

et al. 2021

BMC Pregnancy Childbirth

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“…Results from this study has shown that families understanding of the results provided is still challenging. This observation suggests that despite the high birth prevalence of SCD in the area, still knowledge on the disease is very low (Abioye-Kuteyi et al, 2009;Ezenwosu et al, 2015;Obed et al, 2017;Tutuba et al, 2022). One of the recommendations to address this is to increase public awareness through cultural respectful advocacy campaigns within the communities (Anie et al, 2016;Brown, 2012).…”

Section: Discussionmentioning

confidence: 99%

Communicating sickle cell trait results after newborn screening: Approaches and implications to families

Bukini

Msirikale²,

Marco³

et al. 2022

Preprint

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Tanzania is amongst the countries in Africa with one of the highest prevalence of individuals with Sickle Cell Trait. Identifying individuals with SCT is important as they may potentially have children with Sickle Cell Disease. Interventions such as Newborn Screening for SCD can identify individuals carrying the gene very early on to explore strategies for primary prevention. This study aims to document experiences and perspectives of families who have received SCT results for their children through the NBS Program. We were interested to learn their perspectives on the communication approaches used and implications of the results to families. Our overall goal is to evaluate what approaches works best to support comprehension, understanding of genetic testing, concepts of inheritability and general understanding of SCD. We further aim to explore key issues considered by families as most important to inform not only methods, but also most locally relevant content to guide genetic counselling sessions. In total 29 families provided with SCT results participated in six Focus Group Discussions. Families were recruited through NBS program implemented between June to September 2021. Analysis of the data was done through thematic content analysis. Findings were categorized into two main categories (1) Key issues to consider when communicating sickle cell trait results to families. The following themes were identified under this category (1a) Language used to explain the results (1b) Methods used to provide the results (1c) Who was provided with the results (1d) Families comprehension of the results and (1e) What influences families understanding of the results (2) What are the implications of the results to families. The following themes were identified under this category; (2a) How results influenced future reproductive choices (2b) How will the information be kept within families (2c) Age a child will start to be informed about the results (2d) How results influence gender blames within families. Conclusion: Understanding how to ensure genetic results have been properly communicated is core in developing a genetic counselling program. In places where the programs are not well established, there is a need to explore contexts specific approaches to inform ethically relevant communication models that incorporated families and patient perspectives. This study un-packed the different aspects to consider when developing proper communication models and further highlighted issues to explore with families after receiving the results, with the hope that this information will help to inform genetic counselling sessions in places with high SCD burden.

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“…SCD is a haematological non-communicable disease (NCD), sometimes referred to as the invisible NCD [ 2 ]. It is a public health problem that affects around 5% (includes sickle cell trait and sickle cell disease) of the world’s population [ 3 ], with the highest prevalence found in sub-Saharan Africa[ 4 , 5 ]. It is estimated that 15,000 babies are born with this condition every year in Ghana alone [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

“…Studies have shown that primary caregivers of SCD children have higher levels of depression compared to caregivers of their healthy counterparts [ 23 , 24 ]. The studies that have explored SCD caregivers’ perspectives have documented premarital SCD-status knowledge, caregiver action plans during SCD crises, caregiver-SCD-ward relationship dynamics, caregivers’ mental health, coping mechanisms, and burdens of responsibility [ 4 , 25 , 26 ]. Thus, most of the existing research on the capacity of caregivers of SCD children to provide the needed care have concentrated on the psychological domain.…”

Section: Introductionmentioning

confidence: 99%

Knowledge and nutrition-related practices among caregivers of adolescents with sickle cell disease in the Greater Accra region of Ghana

et al. 2023

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Background Due to its severe adverse effect on child mortality, sickle cell disease (SCD) has been identified as a set of diseases of public health concern. The high mortality rate among children with SCD in Africa has been attributed to several factors including sub-optimal management and care. This study documented the nutrition-related knowledge and practices of caregivers of teenagers who suffer from sickle cell disease (SCD) to inform decisions on integrated management of the disease. Methods The study included caregivers (n = 225) of adolescents with SCD who attended clinic at selected hospitals in Accra, Ghana. Pre-tested semi-structured questionnaire was employed in the gathering of information related to general and nutrition-related knowledge about SCD, as well as data on their nutrition-related practices with regards to their children who suffer from SCD. Pearson’s Chi-square test and binary logistic regression analyses were applied to explore the relationship between caregivers’ nutrition-related knowledge and practice. Results Nutrition-related knowledge among the caregivers studied was low, with less than a third of them (29.3%) of the sample being classified as having good knowledge. Caregivers who considered nutrition care when the child experienced crises were few (21.8%), and those with low nutrition-related knowledge were less likely to do this compared with caregivers having high knowledge (OR = 0.37, 95% CI = 0.18, 0.78). The common nutrition actions reported were the provision of more fruits/fruit juices (36.5%) and warm fluids such as soups and teas (31.7%). More than a third of the caregivers (38.7%) admitted that they faced challenges in caring for their adolescents with SCD, particularly in the area of finance for the needed health care. Conclusion Our study findings indicate that it is important to incorporate appropriate nutrition education messages for caregivers as part of a holistic management of SCD.

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Knowledge and awareness of personal sickle cell genotype among parents of children with sickle cell disease in southeast Nigeria

Cited by 9 publications

References 10 publications

Community based screening for sickle haemoglobin among pregnant women in Benue State, Nigeria: I-Care-to-Know, a Healthy Beginning Initiative

Community based screening for sickle haemoglobin among pregnant women in Benue State, Nigeria: I-Care-to-Know, a Healthy Beginning Initiative

Communicating sickle cell trait results after newborn screening: Approaches and implications to families

Knowledge and nutrition-related practices among caregivers of adolescents with sickle cell disease in the Greater Accra region of Ghana

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