Table 6 Summary of researchers’ experience with the pediatric parent advisory group
Item | Reflections |
|---|---|
Group is a dynamic entity | Iterative, ongoing feedback process between researchers and group members |
Time commitments | Ongoing effort to foster relationship with parents Needing to ensure that research staff are available to attend evening meetings |
Dedicated funding and resources | For parents: compensation for time, transportation, parking, child care, food For staffing: dedicated time (with appropriate skill sets) to set up, facilitate and regularly communicate with group members; conduct regular evaluations involving quantitative and qualitative research methods |
Communications | Clear, and with follow-up regarding outcomes from each project/activity |
Bigger picture | Regular communication about where they fit in the larger program objectives |
Ethics approval | Does that change the conversation with parents, e.g., if they become research subjects |
Training | What (if any) training should be provided, how often, and should it be repeated regularly. Does training change the member, nature of the group, perspective, and nature of the feedback or input members provide. |