Table 3.

Initial topic guide for child and family interviews

For all families

For those aware of ‘palliative care’

Introduction Please tell me your story, in any way that you can/want to Please tell me the story of you Your story Please can you tell me about you? Your family? Your child(ren) What is important to you? What do you like to do? Which places are important to you? Where do you spend your time? Which services are involved in your care? Who comes to see you? What do they do? What is helpful? What is not? Which healthcare professionals do you consider to be key in the delivery of your care? What works best? Which services/professionals are most helpful? Which services/professionals do you value most? What works well? What does not work? How do you think services could be improved? Do you talk to other children/young people/families about your healthcare/services? What do you tell your friends? What tends to come up in these discussions? Would you recommend these services to others?

Palliative care and you (if appropriate) Do you have ‘palliative care’ services? Have you ever heard the term ‘palliative care’? What does that mean to you? What do you receive those services for? What do these services provide for you? Does it matter what a service is called? Do you receive services from the hospice? Can you tell me how you came to receive palliative care/know the palliative care nursing team/the hospice? When were you referred? Who brought it up/made the referral? How was this discussed with you? How was that for you/your family? Do you think that medical/nursing staff receive enough training in this area? What makes you think that? Anything else?