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Table 4 Survey 2: understanding of terms regarding observational research both before and after reading background information

From: Parental opinions regarding consent for observational research of no or minimal risk in the pediatric intensive care unit

QuestionDo not understandUnderstand a littleUnderstand most of itUnderstand very wellImproved understanding after background information: score 4–5/1–2
Do you understand what “observational research with no risk” means?4 (8%)11 (22%)10 (20%)25 (50%)34 (68%) / 9 (18%)
Do you understand what “observational research with minimal risk” means?9 (18%)11 (22%)10 (20%)20 (40%)35 (70%) / 9 (18%)
Do you understand that a ‘consent bias’ may occur and make research findings misleading? (i.e., findings do not apply to all patients)5 (10%)10 (20%)19 (38%)16 (32%)30 (60%) / 7 (14%)
Do you understand there are many difficulties involved in obtaining consent for research?7 (14%)9 (18%)14 (28%)20 (40%)33 (66%) / 8 (16%)
Do you understand that a Research Ethics Board reviews and approves all research studies before they may begin?6 (12%)10 (20%)14 (28%)20 (40%)35 (70%) / 9 (18%)
Do you understand that many safeguards are required by the Research Ethics Board to protect your child’s privacy?2 (4%)11 (22%)14 (28%)23 (46%)37 (74%) / 9 (18%)