On the 29th of June we held our second parent advisory group (PAG) meeting. It was nice to see everyone again, and we had 6 parents come along this time, a playworker called Eleanor and quite a few children too! The meeting was split into 3 parts.
1st part – Update on project progress
Me (Stephen) said I am about half way through the review of all the research on this topic already. At the next meeting we will look at the results from this and help me make sense of it all!
I have made a poster showing the current findings from the review. You can read that here:
I also thanked the Salm family for their help with publishing their story of using medicines, click to read about this here.
2nd part – What does ‘resilience’ mean to me?
We had a talk about what the word ‘resilience’ means to us. First of all we wrote down what we thought the word meant to us (there is no wrong answer here).
We had a chat in pairs first, and then together as a group. We had a great discussion and lots of interesting things were shared. I scribbled down a few of the things that we talked about.
The reason why we talked about this is to help us understand each other. Everyone’s experience is unique to them. Without having a common thread to link everything we say together, it would be very difficult to try and make a case for why things should change.
3rd Part – Helping design the research study about how families use medicines at home
The last bit of the meting was looking at Stephen’s research design. We had a good chat about this and people wrote down their thoughts and feelings on paper.
These are some comments about how the research should collect experiences from families.
And these are some comments about how the study will follow families along their journey from hospital to home. We talked about what type of support families will they need, how often they can be contacted/interviewed, and lots more!
All of the comments that were made will be put into the research plan that I am writing. This will be sent to an ethics committee in the next few months. Then the research should be approved and we can start talking and listening to (and learning from!) families who are using medicines.
Final Comments
And that was the end of the meeting. It was a busy 2 hours. And I hope everyone enjoyed the meeting. We got really good feedback, and I will try my best to do a better one next time.
Stephen
MINIMEDs 
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