Table 6.

Metasummary of discouraging factors mentioned by parents for participation of their child in clinical drug research

Discouraging factor	No. of studies (total = 24)	Individual studies
Fear of risks	14	Baren, 1999; Brody, 2005; Brody, 2012; Buscariollo, 2012; Caldwell, 2003; Harth, 1999; Hoehn, 2005; Lebensburger, 2013; MacNeill, 2013; Patterson, 2014; Pletsch, 2001 (2); Read, 2009; Tait, 1998; Tait, 2003;
Distrust in research (“guinea pig”)	11	Baren, 1999; Caldwell, 2003; Harth, 1999; Hoehn, 2005; Lebensburger, 2013; Menon, 2012; Peden, 2000; Read, 2009; Sammons, 2007; Tait, 1998; Wynn, 2010
Logistics / disruption of daily life a	11	Baren, 1999; Brody, 2005; Caldwell, 2003; Patterson, 2014; Harth, 1999; Lebensburger, 2013; Peden, 2000; Pletsch, 2001; Read, 2009; Tait, 1998; Wynn, 2010
Burden for child	9	Barrera, 2005; Brody, 2005; Buscariollo, 2012; Menon, 2012; Oppenheim, 2005; Peden, 2000; Pletsch, 2001 (2); Read, 2009; Woodgate, 2010
Decision too stressful	7	Hoberman, 2013; Lebensburger, 2013; Menon, 2012; Pletsch, 2001; Read, 2009; Sammons, 2007; Tait, 1998
Fear of randomization	6	Caldwell, 2003; Lebensburger, 2013; MacNeill, 2013; Sammons, 2007; Tait, 1998; Wynn, 2010
No direct benefit for child b	5	Baren, 1999; Barrera, 2005; MacNeill, 2013; Read, 2009; Wynn, 2010
Financial constraints	5	Baren, 1999; Buscariollo, 2012; Harth, 1999; Tait, 1998; Wynn, 2010
Discomfort with proxy consent	2	Buscariollo, 2012; Caldwell, 2003

^a for child and rest of family; ^b of which 3 are defined as studies with no prospect of direct benefit