THE PERCEPTIONS AND EXPERIENCES OF GHANAIAN PARENTS WITH A CHILD WITH SICKLE CELL DISEASE TOWARDS PRENATAL DIAGNOSIS AND ANTENATAL SCREENING

This study aims to explore the perception and experiences of Ghanaian parents with a child with sickle cell disease (SCD) towards prenatal diagnosis and antenatal screening. One of the main objectives of this study is to investigate parents understanding and awareness of SCD and screening of the condition. It also seeks to identify the factors that may either promote or be perceived as barriers to informed reproductive decision-making among Ghanaian parents. This study is qualitative and has been carried out using face-to-face, in-depth semi-structured interviews. Twenty-seven Ghanaian parents who have children with SCD, registered with the 37 Military Hospital in Accra-Ghana were interviewed.
This study found that parents were not well informed in their understanding and awareness of SCD, and the process of screening prior to having a child with SCD. Parents also had different perception and experiences towards screening, but overall, they had positive attitudes towards all forms of SCD screening including prenatal diagnosis. Most parents, however, were not in favour of termination of pregnancy, due to socio-cultural and religious influences. This is important to consider when developing policies aimed at improving healthcare and social services for people with SCD.
The findings recommend the promotion of public education on SCD and screening in enhancing understanding and creating awareness of the condition. Consideration should also be given to making all forms of SCD screening available and affordable (if not free), especially premarital screening, to enhance informed choices.