Sickle Cell Disease screening: Experiences of parents with positive Newborns at Korle Bu Teaching Hospital

Objective.To explore parents experiences following receipt of positive newborn screening for sickle cell disease (SCD) test results at a teaching hospital in Ghana. Methods.Using purposive sampling, data were collected using semi-structured individual guides to interview parents of newborns attending the paediatric SCD clinic at Korle Bu Teaching Hospital (KBTH), the major referral health facility in Ghana. Questions were categorized into 3 main areas: parents reactions to initial positive results, parents responses to in-clinic counselling, and parents attitudes towards follow-up clinic care. Interviews were conducted face to face either in English or a local dialect (Twi) after which they were transcribed verbatim. Data were analyzed using NVivo software to identify relevant codes which were organized into themes and sub-themes. Results.Twenty-four mothers and one father were interviewed between 2nd November 2021 and 28th January 2022. The ages of their children ranged from 7 months to 3 years 9 months. Seventeen (68%) of the parents were married, 5 (20%) had more than one child enrolled in the clinic, and 10 (40%) reported that they or their partners had SCD. The 5 themes identified were: (i) emotional response after disclosure, (ii) decision to share results, (iii) care and management of newborns at home, (iv) knowledge of genetics of SCD, and (v) adherence to routine follow-up. Positive test results elicited worry, surprise, or shock in the majority, especially those with no previous knowledge of or experience with SCD. Most parents had received counselling and educational information on caring for their positive newborns at home and the danger signs of SCD. The decision to share test results with others was influenced by fear of stigmatization. While desiring to see their babies remain healthy, parents defaulted on clinic visits due to financial difficulties and the COVID-19 pandemic. Conclusion.Knowledge of SCD and personal experience influenced parents reaction to initial positive newborn screening for SCD test results. There is a need for more education about SCD among the general population and institutions of strategies to provide psychological and socioeconomic support for families attending the KBTH clinic.