Awareness, acceptability and factors associated with newborn screening for sickle cell disease among pregnant women in a Northern Nigerian Tertiary Hospital

Introduction: Sub-Saharan Africa has the highest burden of sickle cell disease (SCD), with less than 50% of affected children surviving beyond their fifth year. Nigeria is the most endemic country for SCD. Newborn screening (NBS) for SCD enables early diagnosis and enrollment in comprehensive management programs. However, NBS for SCD is not yet widely available in Nigeria. The success of NBS programs depends on awareness and acceptability among key stakeholders, such as pregnant women.

Objectives: This study aims to determine the awareness and acceptability of NBS among pregnant women and to identify factors associated with their awareness and willingness to participate.

Methods: A descriptive cross-sectional study was conducted among 210 attendees of the antenatal clinic at Ahmadu Bello University Teaching Hospital, Zaria. Data on socio-demographic characteristics, awareness, and acceptability of NBS were collected using an interviewer-administered structured questionnaire. Data were analyzed using SPSS version 21, with Fisher’s exact test used to assess associations between variables. A p-value of <0.05 was considered significant.

Results: The mean age of participants was 28 ± 6.3 years. Most women (79.5%) were of Hausa ethnicity; 48.6% had tertiary education, 70.5% had a personal source of income, and 6.2% lived in rural areas. The majority of pregnant women (60.5%) were aware of NBS for SCD, and 96.7% were willing to have their babies undergo screening, mainly within the first 24 hours after birth (68.6%). However, more than two-thirds indicated they would need permission from their spouses to allow testing, even if the test were free of cost. Awareness of NBS for SCD was associated with younger age (<35 years), parity, educational level, socioeconomic status, tribe, and religion (p<0.05). Except for parity, these factors were also associated with willingness to accept NBS (p<0.05).

Conclusion: Awareness of NBS for SCD among pregnant women is high, with an even higher willingness to accept NBS. Most women prefer testing within 24 hours of birth but would need to seek spousal permission, even when the test is free of cost. Awareness and acceptability of NBS for SCD are associated with age, ethnicity, educational level, and place of residence.

Introduction

Sub-Saharan Africa (SSA) bears the greatest global burden of sickle cell disease (SCD), with less than half of affected children surviving beyond five years of age (1) (2). Nigeria remains the most endemic country, accounting for the highest number of annual SCD births worldwide (3). Because of its association with severe and life-threatening complications in early childhood, SCD is routinely included in newborn screening (NBS) programs in countries with established screening policies (4). Strong evidence supports NBS as an effective, evidence-based intervention that facilitates early diagnosis and implementation of preventive measures, ultimately reducing SCD-related morbidity and mortality (5) (6). These preventive strategies include parental education, comprehensive case management, and structured follow-up care (7) (8).

Despite the demonstrated benefits, NBS for SCD remains limited across SSA. Most existing programs are small-scale, pilot initiatives that are hospital-based and lack effective national coordination (7). Scaling up these programs nationally could avert an estimated 2.4 million disability-adjusted life years annually across the region (9). Nigeria has made some progress toward establishing a national NBS program. In 2011–2012, the Federal Ministry of Health launched SCD screening across the six geopolitical zones and developed a national screening protocol. However, by 2017, fewer than 2,000 newborns had been screened nationwide (7). Persistent challenge including inadequate funding, high reagent costs, shortages of trained personnel, and inconsistent sample collection continue to hinder full implementation (5).

Although few Nigerian studies have explored NBS for SCD, most report high public acceptability (7) (10) (11).^,, Among healthcare providers, awareness of the national NBS initiative is high (86%), yet only 55.5% of physicians report willingness to recommend screening (12). Similarly, findings from a multi-country African study by Munung et al. indicate a general preference for NBS over other SCD control strategies, largely due to its simpler decision-making process and feasibility within limited-resource settings (13).

In resource-constrained contexts such as Nigeria, early detection through NBS is pivotal for ensuring timely diagnosis and comprehensive care, which can significantly reduce SCD-related morbidity and mortality (14). Pregnant women, as central decision-makers in infant health, are critical stakeholders in the successful implementation of NBS. Understanding their awareness, perceptions, and willingness to consent to NBS is essential for designing culturally sensitive and sustainable screening initiatives. Identifying barriers and facilitators within this group will inform strategies for effective scale-up and integration of NBS into maternal and child health programs. This study therefore aimed to assess the awareness and acceptability of newborn screening for SCD and to identify factors associated with awareness and willingness to accept screening among pregnant women in Northern Nigeria.

Materials and methods

The study was a cross-sectional descriptive study conducted in the booking Antenatal Clinic (ANC) at Ahmadu Bello University Teaching Hospital (ABUTH), Zaria, Kaduna State, between March and June 2021. The booking ANC clinic is held every Wednesday. Ethical approval was obtained from the Health Research Ethical Committee of ABUTH Zaria (ABUTHZ/HREC/H24/2021). All participants were given detailed information about the study scope in the language comprehensible to the participants before written informed consent was obtained. They were made to understand that participation in the study is completely voluntary and non-participation will not affect he due care they are to receive and they have the right to withdraw at any point in time. Auditory and physical privacy was provided when collecting information in a confined room within the antenatal clinic. Personal identifiers were not collected but study identification numbers were used instead. The data was collected on paper-form and transferred to a passworded computer accessible to only the research team. The hard copies were securely stored in a cabinet.

The sample size was calculated using the Cochran’s formula for a cross-sectional study. Using an expected acceptability of NBS for SCD of 86% from a study by Oluwole et al. (15), power of 80%, 95% confidence interval and a non-response rate of 10%, the minimum sample size was calculated to be 204 women. A total of 210 consenting pregnant women were ultimately recruited for the study. Pregnant women who presented at the antenatal clinic were approached and invited to participate after receiving adequate information about the study. Those who provided informed written consent were enrolled through convenience sampling until the desired sample size was achieved. A structured, interviewer-administered questionnaire was completed for each eligible participant to collect relevant information. The questionnaire was structured into the socio-demographic characteristics of the pregnant women, awareness, acceptability of NBS and attitudes toward NBS sections. Awareness in this study referred to having an idea that SCD in the infant can be diagnosed immediately after birth without waiting till at least sixth month of life. Two experts were involved in assessing the relevance, clarity and appropriateness of each item. The questionnaire was pretested among 10 pregnant women in the antenatal clinic. The data were analyzed using SPSS version 23. Fisher’s exact test was used to assess the association between socio-demographic factors, awareness, and acceptability. A p-value of <0.05 was considered statistically significant.

Result

The mean age and standard deviation of the women were 28 ± 6.3 years. Most of the participants (79.5%) were of Hausa ethnicity, and only 6.2% resided in rural areas. Nearly half (48.6%) had a tertiary education, and 70.5% had a personal source of income. These characteristics are summarized in Table 1.

Table 1

Table 1 . Socio-demographic characteristics of pregnant women, in a study of awareness, acceptability and factors associated with newborn screening for sickle cell disease.

More than half of the women (60.5%) were aware of NBS for SCD, and a vast majority (96.7%) were willing to have their babies undergo NBS, with most preferring the screening to be done within the first 24 hours after birth (68.6%). However, more than two-thirds of the women indicated that they would need to obtain permission from their spouses before allowing their babies to be tested, even if the test is free of charge. These findings are summarized in Table 2.

Table 2

Table 2. Awareness, acceptability, and attitudes towards newborn screening for sickle cell disease among pregnant women.

Age, tribe, place of residence, educational level, and income were all associated with both awareness and acceptability of NBS (p<0.05). Parity was associated with awareness (p=0.00) but showed no association with acceptability (p=0.15). These findings are presented in Table 3.

Table 3

Table 3. Factors associated with awareness and acceptability of newborn screening for sickle cell disease among pregnant women.

Discussion

This study found a higher level of awareness of newborn screening (NBS) for sickle cell disease (SCD) compared to the findings of Babalola et al. and Nnachi et al., where less than 50% of women were aware of NBS (11) (16). The high acceptability found in this study may be because most of the respondents had a high level of education. Most of the women in this study were willing to have NBS, consistent with findings in Lagos (15), but this rate of willingness was much higher than reported by Babalola et al. (11) In Benin, Odunvbun et al. found an acceptance rate of NBS at 99.7% (10), and a multi-center survey in Nigeria reported an acceptance rate of 86.1% (7). These findings suggest a high likelihood of successful utilization of NBS if it were to be widely implemented.

More than two-thirds of the women in this study preferred NBS to be conducted within 24 hours of hospital birth, before discharge. This preference supports the strengthening of NBS implementation before hospital discharge after delivery. Early screening has the potential to increase uptake of NBS and reduce missed opportunities, as many women may not return for postnatal care or immunization. However, this preference contrasts with findings from Ibadan, where most mothers of both known SCD children and those with unknown hemoglobin genotypes preferred testing at immunization centers. It also contrasts with findings from Lagos, where testing within one month of birth was the most preferred timing by mothers (11) (15).

In Nigeria, decision making autonomy has been reported to be a major determinant of utilization of health care services by women (17). Most women in this study indicated that they would need to seek permission from family members, particularly their husbands, before allowing their babies to undergo NBS, even when the test is free. This requirement for spousal permission was more prevalent than in southern Nigeria, where only a third of the women needed permission from husbands, in-laws, or grandparents (11). This difference could result from varied cultural orientations in decision-making within families in different parts of Nigeria and may represent a social barrier to widespread access to NBS for SCD in this region.

However, Nnodu et al. in Nigeria and Katemea et al. from the Democratic Republic of Congo reported that financial barriers are more likely to challenge the implementation of NBS rather than social barriers (7) (18). Even when NBS is available free of charge, uptake might be hindered by socio-cultural factors, highlighting the need for increased health education about the NBS program. Involving socio-cultural organisations, religious leaders, and faith-based organisations in health-related interventions can lead to improved acceptance, participation, and positive health outcomes within the community. These groups have the potential to enhance health education and should be utilized (19).

In this study, awareness of NBS was significantly higher among younger women. This contrasts with reports from a large population of Czech early postpartum mothers, where older women had better awareness of general NBS (20). This difference could be explained by the varying age distribution of women in the two study populations. Similarly, having at least one prior delivery was associated with awareness of NBS in both this study and the Czech study. Age was also found to be associated with the acceptability of NBS, consistent with findings from other studies (7) (11) (18). Educational level was associated with NBS acceptability, aligning with other Nigerian studies (7) (11) but differed from a report from the Congo, which studied over 2000 adults (18).

This study has significant public health relevance as it provided baseline information on the awareness and acceptability of newborn screening for SCD, and identified key facilitators and barriers to its implementation, which can inform the development of culturally appropriate strategies for effective NBS programs. This study is limited by its single-center design and use of convenience sampling, and thus, the findings may not be generalizable to other settings. More studies using probability sampling and conducted in different geographic and cultural contexts are needed to validate these findings.

Conclusion

The awareness of NBS for SCD among pregnant women is high, with an even higher willingness to accept NBS. Most women prefer testing within 24 hours of birth but feel the need to seek permission from family members, particularly their husbands, even when the test is free. Age, ethnicity, educational level, and place of residence were all associated with awareness and acceptability of NBS for SCD.

Data availability statement

The original contributions presented in the study are included in the article/supplementary material. Further inquiries can be directed to the corresponding author.

Ethics statement

The study was approved by Ahmadu Bello University Teaching Hospital, Zaria Health Research Ethics Committee (ABUTHZ/HREC/H24/2021). The study was conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.

Author contributions

RA: Conceptualization, Supervision, Validation, Writing – review & editing, Data curation, Formal Analysis, Investigation, Methodology, Project administration, Resources, Writing – original draft. NA: Conceptualization, Formal Analysis, Methodology, Resources, Writing – original draft, Writing – review & editing, Data curation, Investigation, Supervision. YI: Writing – review & editing, Conceptualization, Investigation, Methodology, Resources. IH: Methodology, Writing – review & editing, Conceptualization, Investigation, Resources. AW: Methodology, Writing – review & editing, Conceptualization, Investigation, Resources. IA: Methodology, Supervision, Writing – review & editing, Conceptualization, Resources. HA: Resources, Supervision, Methodology, Writing – review & editing, Conceptualization.

Funding

The author(s) declared that financial support was not received for this work and/or its publication.

Acknowledgments

We acknowledge the support of the staff of the Antenatal Clinic of the department of Obstetrics and Gynaecology, Ahmadu Bello University Teaching Hospital, Zaria-Nigeria.

Conflict of interest

The authors declared that this work was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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The author(s) declared that generative AI was not used in the creation of this manuscript.

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