Sickle Cell Disease Screening: Perceptions Of Parents With Positive Newborns At Korle Bu Teaching Hospital

Abstract

Abstract Background: Sickle Cell Disease (SCD) is a genetic blood disorder caused by the presence of abnormal haemoglobin (Hb S) leading to acute pain episodes, Anaemia, acute chest syndrome, priapism and organ damage. One of the main interventions for managing the disease is by screening babies at birth for early detection and comprehensive clinical management leading to prolonged life. Early enrolment and comprehensive care are some of the underlying principles of universal newborn screening. There is however a lack of understanding and knowledge of the practice from the perspectives of parents. Aim: This study aimed to explore the experiences of parents of newborns regarding the receipt of positive sickle cell results at the Paediatric Sickle Cell Clinic of Korle Bu Teaching Hospital. Method: An explorative approach to qualitative research was used, and data was collected by using semi-structured individual interview guides to interview mothers and a father of newborns attending the Paediatric Sickle Cell Clinic of Korle Bu Teaching Hospital. A purposive sampling method was used and data collected was analysed using NVivo software to identify relevant codes which were then organized into themes. The Socio-Ecological Model was used to underpin this study. Data analysis was done using thematic analysis. Open coding was used to identify initial codes after which they were categorised into 5 themes and sub-themes. The 5 themes identified were: emotional response after disclosure, decision to share results, care and management of newborns at home, knowledge of genetics of SCD, and adherence to routine follow-up. Result: Parents of positive sickle cell disease newborns at the Paediatric sickle cell clinic of Korle Bu Teaching reported varied emotional responses to receiving the results due to prior knowledge of the disease or personal experiences with the disease. Parents also reported improving their knowledge of SCD. Prior knowledge of SCD and personal experience impact how parents react to positive NBS results of their newborns. Parents of newborns usually adhere to follow-up procedures due to a desire to see their children healthy. However, some default on follow-up due to difficulties such as COVID 19 pandemic and financial difficulties.