The Perception of Parents with a Child with Sickle Cell Disease in Ghana towards Prenatal Diagnosis

Résumé

Abstract Sickle cell disease is a global health concern. In Europe and USA, where the condition is common, prenatal testing is a routine aspect of antenatal care and offered on the basis, of informed reproductive choice. Notwithstanding considerable advances in testing technologies, prenatal diagnosis for sickle cell disease is not common in Africa. There is a particular lack of research examining parental perceptions about the acceptability of antenatal screening. This qualitative paper explores the perceptions of parents, who had lived experiences of caring for a child with SCD, towards prenatal testing for sickle cell in Ghana. A purposive sample of 27 parents (four fathers and 23 mothers), were recruited via a sickle cell clinic in Accra, Ghana. Material was collected using semi-structured interview, using a topic guide that explored parental views on prenatal testing, along with factors influencing decision making about antenatal care. The findings suggest parents lack knowledge about prenatal testing. However, the majority would accept testing should the process be available and affordable. Parents believed the decision to accept screening should be negotiated between both parents rather than the extended family. The decision to accept testing did not mean that parents would use the information to terminate a child with SCD. They were more likely to use the test result to prepare themselves for the birth of their child. Parents accepted, however, that choice was important and that some parents may wish to terminate, given the impact of SCD on a person’s quality of life. The paper concludes that policy needs to establish and promote sickle cell prenatal testing awareness among at-risk populations, bearing in mind the cost implication of the technology and the importance of informed decision making, which connects to the parents’ experience of screening.

Citer ce document

Accès au document

Ce document est hébergé sur son dépôt institutionnel d'origine.

Auteur(s)

Statistiques

Consultations : 1

Téléchargements : 0