Improving how positive newborn screening results are communicated to parents of children with sickle cell disease.

Abstract

Sickle cell disease, the most common inherited disorder at birth in the UK, has been included in the UK newborn screening programme since 2006. For parents, receiving the news that their newborn has a serious long-term condition can trigger reactions such as shock, disbelief and guilt. Guidelines on sickle cell disease provide clear screening pathways, but there is variation in how and by whom positive results are communicated to parents. The way in which this is done is crucial, not only for parents' acceptance of the diagnosis but also for their future therapeutic relationships with healthcare professionals and therefore for their child's future health outcomes. Being given reliable and relevant information by confident and knowledgeable staff gives parents hope that their child will achieve a good quality of life. Based on the literature and on the author's experience as a haemoglobinopathy nurse specialist, this article discusses how to improve the communication of positive newborn screening results to parents of children with sickle cell disease.