Parental opinions about clinical research.
OBJECTIVE
To characterize parental perception of clinical research, particularly in emergency settings. To identify specific aspects of clinical research that concern parents and to discuss how these concerns can be addressed.


METHODS
Quantitative and qualitative survey in tertiary care children's hospital and affiliated clinics.


RESULTS
Family caregivers (n = 136) participated in this study; 81% of study participants agreed or strongly agreed that physicians should do research involving children, with 5% disagreeing. However, 18% felt that researchers care more about the research than about the patient, and 13% believed that when a child is in a research study, physicians must follow the research protocol even if it is not in the best interest of the child. Participants were significantly less likely to endorse the conduct of research in an emergency setting than in a nonspecified setting (P < .001). Parents' foremost concern about emergency research was that it could delay therapy or distract physicians' attention from the child's needs.


CONCLUSIONS
Parents largely support pediatric clinical research, but they have specific concerns that should be addressed in research planning and in communicating with parents about clinical research.
Morris
Marilyn C
MC
Department of Pediatrics, Division of Critical Care Medicine, The Children's Hospital of New York-Presbyterian, Columbia University, New York, New York 10032, USA. mcm2113@columbia.edu
Besner
Deborah
D
Vazquez
Hector
H
Nelson
Robert M
RM
Fischbach
Ruth L
RL
D000328:Adult; D000554:Ambulatory Care Facilities; D035843:Biomedical Research; D002648:Child; D002669:Child Welfare; D004636:Emergency Service, Hospital; D005260:Female; D006776:Hospitals, Pediatric; D006801:Humans; D008297:Male; D008875:Middle Aged; D009014:Morals; D010290:Parents; D011639:Public Opinion; D011795:Surveys and Questionnaires