Table 4 Parent preferences on child involvement in decision-making for longitudinal research participation
| Â | Level of agreement with child involvement in RESEARCH STUDIES | Level of agreement with child involvement in DATA SHARING | ||||
|---|---|---|---|---|---|---|
Disagree | Neutral | Agree | Disagree | Neutral | Agree | |
Tell - My child will be informed that they are part of a research study/their non-biological, de-identified data is being shared. As their parent. I decide the availability of their participation. | 36 (10.5) | 39 (11.3) | 271 (79.0) | 26 (7.5) | 36 (10.4) | 283 (82.1) |
Talk - My child will be involved in discussions about their participation in the research study/sharing their non-biological, de-identified data. They can express their opinion and preferences. As their parent, I will decide their participation. | 39 (11.4) | 51 (14.8) | 255 (74.6) | 28 (8.2) | 37 (10.8) | 277 (81.0) |
Decide - My child will decide whether or not, and how, they participate in the research study/share their non-biological, de-identified data. | 21 (6.1) | 19 (5.5) | 305 (89.2) | 75 (21.8) | 46 (13.3) | 224 (64.9) |