Table 1.

Qualitative Interview Guide

Questions
1. What has it been like to be a caregiver for your loved one with ECD? How has the fact that ECD is so rare impacted your experience?
2. Tell me a little bit about how your loved one came to be diagnosed with ECD. Was it difficult to find a physician who understands this illness?
3. From your perspective, how long was it from the time your loved one experienced symptoms to his/her receiving the diagnosis?
4. What do you understand about your loved one’s treatment? Do you have a sense of his/her prognosis? What do you expect to happen after this treatment is completed?
5. What have your responsibilities been as a caregiver to your loved one with ECD?
6. Tell me a bit about the types of symptoms your loved one is experiencing. For example, does he/she have pain? Is this pain (or other symptoms) controlled? How have these symptoms impacted your role as a caregiver?
7. Have you noticed any changes in your loved one’s cognition, e.g., memory, attention, changes in personality? If so, what? And how have these impacted your experience and role as a caregiver?
8. Is your loved one able to work? What new responsibilities at home do you have now that you are taking care of him/her?
9. How have you been impacted emotionally by your caregiving role? Have you experienced anxiety? Depression? Sleep difficulties? Do you feel burned out?
10. How have you been impacted physically by your caregiving role? Have you been able to take care of yourself as well as your loved one with ECD?