Knowledge and Awareness about Sickle Cell Disease: A Review of the Literature to Inform Prevention Development and Implementation

Sickle Cell Disease (SCD) and Thalassaemia are considered the two major Haemoglobin Disorders, and have recently been declared a global health problem by the World Health Organization (WHO) (Odame, Kulkarni & Ohene-Frempong, 2011). Key to prevention is an understanding of how SCD is inherited from parents in the same way as blood type or any physical traits. The purpose of this review was to assess the level of knowledge and awareness about SCD in order to plan for and develop effective prevention programs to reduce further spreading of the disease through informed reproductive choices. Studies were identified using MEDLINE, Academic Search Complete, CINAHL Plus with Full Text, Communication & Mass Media Complete, Health Source: Nursing/Academic Edition, Medic Latina, PsycARTICLES, Psychology and Behavioral Sciences Collection, PsycINFO, Religion and Philosophy Collection, Google Scholar, and ProQuest Dissertations & Theses Databases. Fifteen studies with diverse geographical backgrounds were included in the review. Findings indicate that there is a lack of knowledge and awareness about SCD and carrier status, inheritance and transmission of the disease, reproductive implications, and the importance of knowing one’s sickle cell status among high-risk populations. These results have implications for future research, practice and policy. The high prevalence of SCD suggests that social workers will encounter patients with this genetic condition. Therefore it is important that social workers are knowledgeable about SCD and the physical, psychological and psychosocial problems affecting this vulnerable population. Practioners should be sensitive to the cultural and racial issues attached to the disease. Given the limited knowledge about the disease and reproductive implications among this population, future research focusing on effective strategies for increasing knowledge and awareness among at risk populations are needed.  Most studies focus on patient education however; there is a gap in the literature regarding education efforts to increase knowledge and awareness of individuals (non-patients) at risk. An important policy implication includes age appropriate education addressing the nature and inheritance of SCD in schools. In fact, addressing SCD in schools provides an opportunity for education regarding those affected, how to reduce stigma and discrimination towards those affected, and also education for those at risk of transmitting SCD to their future children. There also needs to be policies supporting funding for programs aiming to increase education and awareness among populations at risk.