Table 2.

Key Focus Group Research Questions: Barriers to Clinical Trial Participation of African-American and Black Youth with Sickle Cell Disease and Their Parents

Parent Group (whose child with SCD is age 2 to 16 years)

Where or whom do you turn to learn about Sickle Cell Disease (SCD)? Where and whom do you turn to learn about treatment options for SCD? What is the best way to inform people about treatment options for SCD? What information is needed to make the best decision about clinical trial participation? What are the barriers African-Americans / Blacks face in learning about treatment options available to their child with SCD? How do people get information about Clinical Trials? What treatment options has your child’s doctor discussed with you? What treatment options have you explored for your child’s sickle cell disease? Has the doctor discussed bone marrow transplant (BMT) as a treatment option? What are the some of the barriers that you believe African-Americans face in seeking BMT? What do you know about clinical trials? Would you consider a clinical trial for your child that offers transplant for SCD? Why or why not? Where do you seek information and support from regarding your child’s disease and treatment options? What is the best way to educate parents of children with SCD on clinical trials? (a) Who do parents turn to when faced with making a medical decision for their child? (b) Are some sources more trustworthy than others?

Youth Group (ages 12–16)

When did you first learn about SCD? (a) How do you get information about SCD? (b) Where do you seek information about your disease? How do you get information about treatment options? Have you been told of – or have you heard of – bone marrow transplant/ clinical trials? Has your doctor discussed bone marrow transplant as a treatment option? Do you feel you could ask your doctor questions about your disease? What is the best way for you to get information about clinical trials?