Development of an Online Reproductive Health Intervention for Individuals with Sickle Cell Disease or Trait

Abstract

The purpose of this article is to describe the method of developing an internet-based reproductive options intervention to increase informed reproductive decision-making among individuals with sickle cell disease (SCD) or sickle cell trait (SCT). An interprofessional team of graphics and media specialist, nurses, physicians, and researchers collaborated to develop the intervention. Individuals from the community served as advisory board members who reviewed and advised on webpage design, content, delivery, and media. The intervention was theory based, delivered online, and experientially oriented for young adults of reproductive age with SCD or SCT. The intervention was culturally specific, supporting individuals with SCD or SCT in making informed reproductive decisions about transmission of SCD or SCT to their offspring. The intervention could be strengthened to include content on implementing behaviors concordant with informed reproductive decisions. Health care providers can use the result of this study to enhance their knowledge about the complexity of parenting options.

Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease

“…Research suggests low rates of contraception use and high rates of unplanned pregnancies among the SCD population [13,14]. Despite increasing awareness about the wide spectrum of reproductive health implications of SCD, educational resources for these AYA remain limited, and those that exist exclude fertility-related content and/or do not target adolescents [15][16][17].…”

Factors associated with young adult engagement with a web-based sickle cell reproductive health intervention

“…However, few such interventions exist specifically for individuals with SCD or SCT. This gap led to the development of CHOICES, a web-based sexual and reproductive educational intervention designed for those with SCD or SCT [ 5 – 7 ]. Web-based intervention effects are influenced by user engagement issues, and little is known about factors driving user engagement among young adults with SCD or SCT.…”

“…CHOICES is an innovative multimedia web-based intervention that provides information on the genetic inheritance of sickle cell and different reproductive options [ 5 – 7 ]. The intervention group showed significantly higher reproductive health knowledge at immediate posttest than the control group who were provided with an ebook containing similar information as would be given at the doctor’s office.…”