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Paper Presentation

Diversity, Disparity, and Inclusion

Session: Trust and Identity in Medicine

Attitudes Toward Medical Research Among Adolescent Patients and Parents of Children with Sickle Cell Disease: It’s All About Trust and Human Relationships

Saturday, September 21, 2024
10:15 AM – 11:15 AM CT
Location: Grand Ballroom C (First Floor)
Abstract: 

Background: It is often believed that Black Americans distrust medical research. Health care disparities and systematic racism further complicate these narratives, especially among patients with sickle cell disease (SCD), the majority of whom identify as Black. Little is known about trust in medical researchers among parents of children with SCD and adolescent patients in the gene therapy era.

Methods: In a prospective mixed-methods study, parents of children with SCD and adolescent patients were surveyed about trust in researchers and healthcare professionals as well as attitudes towards medical research. A subset of parents were interviewed to further explore attitudes about medical research.

Results: Of 300 participants (200 parents, 100 adolescents), 99% self-identified as Black. Adolescents were a median age of 16 years. Using validated surveys, parental respondents showed significantly more trust in healthcare providers than adolescent patients (p < 0.0001), whereas teens showed significantly more trust in medical researchers than parents (p < 0.001). Several themes emerged from the qualitative interviews including the potential for personal benefit, trust in their hematology clinic, and the potential to benefit future patients. Hesitation about research was often related to limited trust due to no personal relationship with the research team, and perceptions that the research was either too novel or too risky.

Conclusion: Participant attitudes toward medical research was largely positive, however it was influenced by an individual’s trust in the research team and the quality of the communication received about the purpose of the clinical trial, perceptions of personal utility, and the perceived risks of participation.

Learning Objectives:

After participating in this conference, attendees should be able to:
  • Understand that attitudes towards medical research among minority patients with serious, chronic illness are not monolithic.
  • Describe how trust and the quality of communication can influence attitudes towards participation in medical research.
  • Model behaviors that promote mutual respect for patients/families and identify actions that improve communication.
Akshay Sharma – St. Jude Children's Research Hospital; Jacklyn Boggs – St. Jude Children's Research Hospital; Rushil Acharya – St. Jude Children's Research Hospital; Mary Caples – St. Jude Children's Research Hospital; Jami Gattuso – St. Jude Children's Research Hospital; Yunusa Olufadi – St. Jude Children's Research Hospital; Guolian Kang – St. Jude Children's Research Hospital; Belinda Mandrell – St. Jude Children's Research Hospital