Sickle cell disease screening: Experiences of parents with positive newborns at Korle Bu TeachingHospital

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 children attending the Paediatric SCD clinic at Korle Bu Teaching Hospital (KBTH), a 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. The Socio-Ecological Model of Health was used to underpin this study. 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 and Microsoft Word to identify relevant codes, which were then 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 7 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, (v) adherence to routine follow-up, (vi) cost, and (vii) Culture. 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 SCD children 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 children 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. Culture and Cost were structural barriers to care. There is a need for more education about SCD among the general population and institutions, and there is a need to provide psychological and socioeconomic support for families attending the KBTH clinic.