SICKLE CELL CARRIER SCREENING FOR ADOLESCENTS IN SAUDI ARABIA: A MIXED-METHODS APPROACH TO UNDERSTANDING SOCIETAL ACCEPTANCE

Abstract

Sickle cell disease (SCD) is one of the most common genetic diseases in Saudi Arabia, possibly due to the high rates of intrafamily marriages. This blood disease is recessive; a child can develop SCD only if the two parents carry the abnormal gene. However, carriers are typically asymptomatic, so most do not know their carrier status, which poses potentially serious health implications for future children. A possible preventive measure is early carrier screening for adolescents to help families arrange their marriages. However, little is known about how Saudi families would perceive such a program. A two-phase, mixed-methods approach was used to examine how adolescents and parents would perceive early SCD carrier screening and factors that facilitate or impede their participation. Exploratory focus groups were conducted with parents and adolescents (N = 31) to gain a more contextualized understanding of their decisionmaking processes towards participation. Themes derived from this phase were used to inform the development of a quantitative perceptual mapping survey to understand participants’ conceptualizations of the relative importance of factors considered during the decision-making process (N= 3,080). These two phases were guided by Health Belief Model and the Social Ecological Model. Further, mediation analyses estimated the impact of religiosity on intention to participate in early screening. Results suggest that parents and adolescents reported similar supportive attitudes towards SCD and early screening. Also, the perceptual maps showed that both groups may benefit from similar message strategies. Finally, religiosity significantly influenced intention to participate in early screening. These findings could guide the development of health campaigns.