Table 1 Interview structure
Focus | Key questions | Follow-up questions for ventilated individuals | Follow-up questions for relatives |
|---|---|---|---|
Daily care situation | Please describe your typical daily routine. Start in the morning. What happens first when you wake up? | Where in everyday life do you need support? Who assists you? Imagine washing and dressing, eating and drinking, moving around or toileting. What are the problems in your daily care? What works well? | What are your responsibilities as a family caregiver? What are the problems in daily care? What works well? In your role as a family caregiver: What do you find fulfilling? What is less fulfilling, exhausting or difficult? Please, give an example. |
Social relationships and participation | What is your experience of everyday life with friends or family? | What role do care services or relatives play in this? What do you need to be independent? Imagine meeting friends, trips, or holidays. How do you experience the quality of your social relationships? Please, illustrate this. | What changes in social life have you experienced? How do you experience the quality of your social relationships? Please, illustrate this. |
Safety of care | What role does safety of care play for you? | Please share a situation that made you feel unsafe. What exactly happened? | Please share a situation that made you feel unsafe. What exactly happened? |
Care coordination | How is care organised? | Who coordinates the contacts? How and with whom is communication organised? How is the collaboration between the involved professionals organised? What is your role in this? What roles do others have? What are problems in care coordination? What works well? Please, illustrate this. | Who coordinates the contacts? How and with whom is communication organised? How is the collaboration between the involved professionals organised? What is your role in this? What roles do others have? What are problems in care coordination? What works well? Please, illustrate this. |
Capacity for improvement | Where do you see a substantial need for improvement of care? | Please, summarise. | Please, summarise. |