Table 1.

Participant characteristics.

Children (n = 26)	N or mean (range)	Parent/carers (n = 40)	N or mean (range)	Siblings (n = 13)	N or mean (range)
Age (years)	12 (5–17)	Age (years)	40 (21–65)	Age (years)	9 (5–15)
		Age of child with life-limiting condition (years)	12 (0–17)	Age of child with life-limiting condition (years)	10 (3–16)
Gender	17:9	Gender		Gender
Female:male		Female:male	30:10	Female:male	7:6
		Relationship to child		Relationship to child
		Mother	29	Sister	7
		Father	10	Brother	6
		Sibling caregiver	1
Diagnosis		Diagnosis of child		Diagnosis of child
Cancer	6	Infectious disease	2	Metabolic	1
Metabolic	1	Cancer	6	Neurological	7
Neurological	5	Metabolic	9	Gastrointestinal	2
Respiratory	1	Neurological	10	Congenital	3
Gastrointestinal	10	Gastrointestinal	4
Congenital	3	Genitourinary	1
		Perinatal	1
		Congenital	7
Health and social care professionals (n = 15)		N or mean (range)	Commissioners (n = 12)		N or mean (range)
Gender			Gender
Female:Male		14:1	Female:Male		11:1
Profession			Geographical location
Palliative care nurse specialists		4	Southeast England		4
Children’s Community nurse		1	Greater London		1
Hospice nurse		1	East England		2
Ward sister		1	Northwest England		1
Paediatric palliative medicine consultant		1	Yorkshire and Humber		4
Haematology consultant		1
General Paediatrician		1
Social worker		1
Chaplain		1
Psychologist		1
Play specialist		1
Physiotherapist		1