Table 4.

Factors Associated with Perceived Burden and Benefit

What did you find burdensome	Patient n (%)	Caregiver n (%)
Too weak/feeling too ill	4 (1.5)	1 (0.4)
Too many questions/took too long	11 (4.1)	7 (2.6)
Interfered with other activities	8 (3.0)	2 (0.7)
Questions were upsetting	9 (3.3)	0 (0.0)
Questions were confusing/difficult to answer	12 (4.4)	6 (2.2)
Questions were too personal	9 (3.3)	1 (0.4)
What did you find beneficial	Patient N (%)	Caregiver N (%)
Helpful/relief to be asked about issues that affect my/my child’s life	118 (43.5)	171 (63.1)
Addressed issues I often don’t have an opportunity to discuss with others	71 (26.2)	113 (41.7)
Addressed issues the health care team doesn’t often ask me about	61 (22.5)	99 (36.5)
Helped facilitate treatment of my/my child’s emotional distress	40 (14.8)	78 (28.8)
Helped pass the time/keep my mind busy	142 (52.4)	63 (23.2)
Made me feel good to help others/contribute to society	160 (59.0)	189 (69.7)