Table 1 Meaning-oriented semi-structured interview guide

1. Could you please describe to me what your life looked like prior to [child’s name] diagnosis?

2. What has life been like for you after [child’s name] was diagnosed with the illness?

3. What was your experience like providing care to [child’s name]?

4. How has your relationship with [child’s name] changed throughout the process of illness?

5. What was your experience like as [child’s name] reaches the final phases of life?

6. How has your life changed after the passing of [child’s name]?

7. What was your experience like with the health and social care system throughout this journey?

8. Looking back at this experience, what helped you along your journey of caregiving and bereavement?

9. If you have the opportunity to speak with someone who is currently going through a similar situation as you had, what kind of advice would you give to them?

10. As a parent who has been through this experience, is there a message that you would like to share with the world?