Sickle cell carriers' unmet information needs: Beyond knowing trait status

Abstract

Benefits of identifying sickle cell disease (SCD) carriers include detection of at‐risk couples who may be informed on reproductive choices. Studies consistently report insufficient knowledge about the genetic inheritance pattern of SCD among people with sickle cell trait (SCT). This study explored perspectives of adults with SCT on the information needed to make an informed reproductive decision and the recommendations for communicating SCT information. Five focus groups (N = 25) were conducted with African Americans with SCT ages 18–65 years old. Participants were asked about their knowledge of SCT, methods for finding information on SCT, impact of SCT on daily living, and interactions with healthcare providers. An inductive‐deductive qualitative analysis was used to analyze the data for emerging themes. Four themes emerged, highlighting the unmet information needs of African American sickle cell carriers: (a) SCT and SCD Education; (b) information sources; (c) improved communication about SCT and SCD; and (d) increased screening strategies. Future studies are needed to determine effective strategies for communicating SCT information and to identify opportunities for education within community and medical settings. Identifying strategies to facilitate access to SCT resources and education could serve as a model for meeting unmet information needs for carriers of other genetic conditions.

Considerations for the use of qualitative methodologies in genetic counseling research

“…Cognitive Theory (originating from the field of psychology) to inform their analysis of the perspectives of Sickle cell carriers' unmet informational needs (Mayo-Gamble et al, 2019).…”

Tailored Parenting Plans of Young Adults With Sickle Cell Disease or Sickle Cell Trait

“…9,10 Individuals living with SCD must consider how to manage their own SCD and that of their children at risk for or living with the disease. 9 Another consideration is how to determine the appropriate timing of communicating to their children their sickle cell status. 11 Timing of pre-parenting information is critically important for young adults as they become sexually active or begin to contemplate starting families of their own.…”

“…Individuals need to have an accurate understanding of genetic inheritance, understand options for becoming parents, and recognize the potential impact of SCD or SCT on their children's lives and the entire family 9,10 . Individuals living with SCD must consider how to manage their own SCD and that of their children at risk for or living with the disease 9 . Another consideration is how to determine the appropriate timing of communicating to their children their sickle cell status 11 .…”

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

“…Therefore, sickle cell genetic status could be a factor that influences how participants engage with the intervention. Findings indicate that many affected individuals lack reproductive knowledge about genetics and its role in making informed reproductive decisions [ 22 – 25 ].…”