TABLE 1

Interview guide for dyadic interviews.

Patients only
• How long have you been ill?
• What symptoms brought you to the doctor?
• What do you usually call your illness?
• How were you diagnosed?
Patients and family caregivers
• How does your illness affect your life right now?
• What physical issues do you experience (cough, shortness of breath, sleep problems, limitations)?
• What psychological issues do you experience (low energy, lack of security, anxiety, worry, social isolation)?
• How does your illness affect your work or free time?
• What is most difficult to deal with right now?
• How is the illness progressing?
• How does this influence your family?
• Are you sufficiently informed about your illness?
• Have your roles and responsibilities changed after your illness?
• How do you support each other?
• How do you handle the illness?
• What support do you receive from the hospital?
• Do you receive support from others?
• What kind of support would you like to get from the hospital?
• Do you need to meet others with the same illness?
• How are your expectations for the course of your illness?
• What are your thoughts about the future?
• What are your needs for improvement?
• Any additional questions?
  • Constructed based on the evidence and research of Bajwah et al. [7, 17], Schoenheit et al. [14], Swigris et al. [13] and Belkin et al. [18]