Table 4 Survey 2: understanding of terms regarding observational research both before and after reading background information
Question | Do not understand | Understand a little | Understand most of it | Understand very well | Improved 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%) |