Table 5.

Needs and preferences expressed in focus groups

		Patients (N = 7)	Parents (N = 11)	Survivors (N = 18)
Interpersonal relationships	Honesty	x	x	x
	Reassurance, support and empathy	x	x	x
	Being taken seriously		x	x
	Sufficient time for communication	x	x	x
	Time to come to terms with upsetting information	x	x	x
	Trust in health care professionals' expertise		x	x
	Not being constantly addressed as patient	x	x	x
	Acquaintance with child patient	x	x	x
Information exchange	Being fully informed	x	x	x
	Clarity of information	x	x	x
	Opportunity to ask questions during the consultation	x	x	x
	Avoidance of technical jargon	x	x	x
	Additional written information		x	x
	Unambiguous information		x
	Differentiation in amount and kind of information		x	x
	General information at diagnosis, detailed information later	x	x	x
	Repetition of important information		x	x
	Written summary of consultations		x
	Notification of the timing of consultations	x	x	x
	Presence of patient during consultations	x	x	x
	Parent-patient role delineation in information exchange	x	x	x
	Accessibility of health care providers	x	x	x
Participation in decision making	Level of participation in major decisions	x	x	x
	Level of participation in minor decisions	x	x	x

Note. x = need or preference is expressed in focus group