A mixed-method study on awareness, haemoglobin phenotype result accuracy and sickle cell knowledge among parents of children with sickle cell disease in ibadan, Nigeria

一项关于尼日利亚伊巴丹镰状细胞病患儿父母对镰状细胞病的认知、血红蛋白表型结果准确性和相关知识的混合方法研究

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Abstract

INTRODUCTION: Nigeria bears the highest global burden of sickle cell disease (SCD), with significant implications for public health infrastructure and healthcare delivery. Despite its prevalence, there remains significant gap regarding phenotype awareness, diagnostic precision, and disease comprehension among families affected by SCD. This investigation examined haemoglobin phenotype awareness, SCD knowledge levels, and the incidence of erroneous phenotype results among parents of children with SCD in Ibadan, Nigeria. METHOD: A mixed-methods study was conducted among 209 parents of children with SCD attending paediatric haematology clinics at the University College Hospital and Oni Memorial Children Hospital in Ibadan. Data were collected using structured questionnaires and supplemented with six key informant interviews. Quantitative data were analysed using IBM SPSS, and qualitative data were thematically analysed to complement the quantitative findings. RESULTS: While 99% of respondents were aware of their phenotype, 29.2% discovered their status only after having a child with SCD or during a health crisis. Notably, 54.6% reported receiving incorrect phenotype results, with private facilities accounting for 73.5% of these errors. Knowledge assessment revealed that 64.1% had moderate knowledge, 20.6% good knowledge, and 15.3% poor knowledge of SCD. Health talks (32.6%) and doctors (23.5%) were the primary sources of SCD information. Significant misconceptions persisted, with only 7.2% able to differentiate between sickle cell trait and disease. CONCLUSION: This study highlights the need for strengthened laboratory oversight and standardised testing protocols to improve accuracy of haemoglobin phenotype result; targeted awareness campaigns to encourage early phenotype screening; and enhanced public education to address misconceptions and improve knowledge of sickle cell disease.

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