Table 2.

Parent Reports of Distress and Utility of Research Participation

	How useful to you personally was the experience of completing this questionnaire?
How distressing was the experience of completing this questionnaire?	Not at all	A little	Somewhat	Very
Not at all	n=26	50	31	8
	14%	27%	17%	4%
A little	23	20	10	2
	12%	11%	5%	1%
Somewhat	7	2	5	0
	4%	1%	3%	0%
Very	2	0	0	0
	1%	0%	0%	0%

Parents for whom distress outweighed utility (rating for distress was greater than rating for usefulness): n=34, 18.3%.

Parents for whom distress and utility matched: n=51, 27.4%.

Parents for whom utility outweighed distress: n=101, 54.3%.