Table 1.

Participant characteristics.

Age	Mean 12 years (range 5–17)
Aged 5–7 years	n = 3
Aged 8–10 years	n = 7
Aged 11–15 years	n = 12
Aged 16–17 years	n = 4
Gender
Male	n = 9
Female	n = 17
Condition (only ICD-10 chapter headings are reported to preserve anonymity)
Gastrointestinal	n = 10
Cancer	n = 6
Neurological	n = 5
Congenital	n = 3
Metabolic	n = 1
Respiratory	n = 1
Present during interview
Participant and researcher only	n = 3
Participant, researcher and parent	n = 18
Participant, researcher and sibling	n = 1
Participant, researcher, sibling and parent	n = 1
Participant, research and paid caregiver	n = 3
Interview duration	Mean 37 min (range 12–81 min)
Location of interview
Hospital or hospice	n = 16
Home	n = 6
Video call	n = 3
Phone call	n = 1