Table 1 Qualitative interview guide

Interview guide for focus group interview

 Did you ever know that you could suffer from this disease?

  Probe: why did u think you could never get have this problem

 Can you anticipate today that who in your family will acquire this disease in the future?

 When do you check the status of your disease?

  Probe: please elaborate

 What problems do you encounter while going for testing?

 How do you take care of your everyday issues related to your health problems?

 Why do you think you take care of your health?

 What prevents you from taking care of yourself?