July 18, 2017, by Elizabeth Liddle
RECOGNeyes: Feedback from the Patient Public Involvement (PPI) meeting
We organised a PPI group with four members. The goal was to discuss our research plans. By involving patients and members of the public we had the opportunity to get a common sense opinion of what we’re doing from the perspective of those with lived experience. The panel had an opportunity to get to know one another a little before we started. The general consensus was that as a condition ADHD is neglected and often those with the condition are discriminated against. There are few supports available and little understanding of the condition. It was felt that children with ADHD are often labelled as naughty.
To optimise recruitment it was suggested that the research team attempt to identify the potential frustrations and reservations potential participants might have around involvement in the research. Then use this information to inform our recruitment strategy.
It could be useful to get schools interested in participating in the research by saying that we are trying to give something to an under services group, a group that is discriminated against. Also, it might be helpful to highlight that the intervention is something that may help to get children who have been excluded from getting back involved with the mainstream.
It was suggested that ultimately an effective route for the delivery of the intervention would be to have a child’s paediatrician recommend to the child’s school that the pupil receives the training intervention in the school environment. Also, more emphasis could be given to this approach to our recruitment.
There is the danger that by recruiting pupils in schools who might benefit from receiving the training we are also putting a target on them. Some schools may find these same students to be difficult and their involvement in our study could be used to support arguments that would exclude these children from the main stream. Schools that already have special “units” for children with special needs would not have this problem to the same extent. These units are mostly in secondary schools.
It was suggested that we inquire of the parents of potential participants what supports are currently in place at their child’s school.
Completing the training
It was suggested that teachers might find it easier if we stated that pupils should complete 9 school training sessions with 3 per week occurring at the same time of day each time. This approach would fit well with teaching schedules.
It was felt that for younger children completing home training would likely need to be encouraged with parental support. For older children, it was suggested that parental supervision of adherence to a training schedule could be counter-productive. It was felt this supervision could undermine the potential enjoyment of playing the game.
Generally, it was felt that a training schedule and reminder texts would be useful and welcome for home users.