Purpose of this Research Study
This study wants to learn more about the problems people with sickle cell disease face and how they cope with them. We have interviewed people with sickle cell disease from around the country to do this. Now, we want to hear from caregivers, significant others, and family. This study will help us find gaps in treatment and develop a program to improve pain care. Overall, we want to better help people living with sickle cell disease and their families.
Participation
We want to hear your personal story in a private interview. The Zoom or phone interview will be with a trained professional from the University of Pittsburgh.
- The interview will take about 45 minutes. You will receive a $60 gift card for your time. We will ask questions about pain, disability, stigma (negative beliefs or attitudes about something), and discrimination (unfair treatment).
- Your interview will be confidential. This means we will not share what you say with your healthcare team or anyone outside our research team.
To be in the study, you must be:
- Caregiver to an adult diagnosed with sickle cell disease
- 18 years of age or older
- Live in the United States
- Can read and speak in English
- Have a device with an internet connection for the study interview and survey
We are a research team at the University of Pittsburgh. Your participation is voluntary. This means you can stop being in the study at any time. We will keep the information you share with us confidential. This means we will not share your information with your medical team, your loved one’s medical team, or anyone outside our research team.
Study Team
Coordinator: Emily McFerran
Contact Us With Questions
- If you have any questions or concerns, please contact Dr. Lakeya McGill or Emily McFerran at (412) 883-0956 or painlab@pitt.edu.
- For information about your rights as a participant, contact the Human Subjects Protection Advocate at 1-866-212-2668.