Table 1.

Interview Guide

Introduction: The purpose of this meeting is for you to share your thoughts and ideas about how you talk with the brothers and sisters of your child with sickle cell disease. Some parents and the brothers and sisters or siblings of children with special needs have said that their communication with each other is open and easy. Other parents and the siblings have said it is hard or difficult to talk about a chronic illness. I will begin by asking you to think back about how you have talked with the brothers and sisters or siblings of your child with sickle cell disease. How did you first talk with the siblings of your child with sickle cell disease? Has that changed over time? How? How do you and the siblings usually talk about sickle cell disease today? How do you decide how much to tell the siblings about sickle cell disease? Some parents have said they find it easier to talk with the siblings when they are riding alone in the car or going for a walk. When do you find it easiest to talk with the siblings of your child with sickle cell disease? What conversations have you and the siblings had about the future of your child with sickle cell disease? Do you have conversations about how sickle cell disease will affect your family in the future? Did you or the siblings start the conversations? What do the siblings tell you about sickle cell disease? What questions about sickle cell disease do the siblings ask you? What do the siblings tell their friends about sickle cell disease? How do you talk with your own parents or other relatives about sickle cell disease? Has your family experienced negative attitudes from others towards you or your child with sickle cell disease? If other people say things about your child with sickle cell disease, how do you handle that? Do you talk with the siblings about these times? Have you had times when your child with sickle cell disease and your family did not feel accepted by the community? How do the people in your church act toward your child with sickle cell disease and your family? Toward the siblings? How could professionals help parents to talk with the siblings about sickle cell disease? What tips and suggestions do you have for other parents about talking with siblings about sickle cell disease?