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Sickle cell carriers' unmet information needs: Beyond knowing trait status
Tilicia L Mayo-Gamble1, David Schlundt2, Jennifer Cunningham-Erves3
1Department of Health Policy and Community Health, Management and Behavior, Jiann-Ping Hsu College of Public Health, Georgia Southern University, Statesboro, Georgia.
Journal of Genetic Counseling
|April 11, 2019
Summary
Adults with sickle cell trait (SCT) need better education and communication regarding sickle cell disease (SCD) inheritance for informed reproductive choices. Improving access to SCT information and screening strategies is crucial for carriers.
Area of Science:
- Genetics
- Public Health
- Medical Education
Background:
- Identifying sickle cell disease (SCD) carriers is vital for reproductive counseling.
- A significant knowledge gap exists regarding SCD inheritance patterns among individuals with sickle cell trait (SCT).
Purpose of the Study:
- To explore the information needs of adults with SCT for making informed reproductive decisions.
- To gather recommendations for effectively communicating SCT information to carriers.
Main Methods:
- Qualitative study involving five focus groups with 25 African American adults with SCT (ages 18-65).
- Inductive-deductive thematic analysis of participant data on SCT knowledge, information seeking, daily impact, and healthcare interactions.
Main Results:
- Four key themes emerged: unmet needs in SCT/SCD education, information sources, communication strategies, and screening approaches.
- Participants highlighted a desire for clearer information on genetic inheritance and improved interactions with healthcare providers.
- There is a clear demand for enhanced screening strategies and accessible educational resources.
Conclusions:
- Effective communication strategies and accessible educational resources are essential for empowering individuals with SCT.
- Future research should focus on developing and testing methods for disseminating SCT information in community and clinical settings.
- Addressing these unmet needs can serve as a model for supporting carriers of other genetic conditions.