MINIMEDs

Parent Advisory Group – January 2025

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by

Stephen Morris
in

In January it was time for us to meet again. This was the third meeting of our parent advisory group.

It was a beautiful, cold and sunny morning in January for our meeting.

I am sorry this post is a little late, but this is because I have been on a ‘content creation’ course at the university. This has included video editing, which I have used to create this video of the event. I will aim in the future to make short videos of all our activities. This is so if you can’t come to the event, you can get an idea of what happened.

A video summary of the meeting.

We split the meeting into two sections.

1st half of meeting

For the first part, we each reflected on a story we had from our own lives. This was based on our experience of using medicines. Then we shared our experiences with someone else sitting next to us. And then after that, a few people shared to the whole group.

Thinking about our stories and then sharing them with someone sitting next to us.

We then looked at our stories and broke them into two parts. The first bit was the ‘disruption’, or what went wrong. The second part was the ‘adaption’, or what we had to do to make things right.

We then took these parts of our stories, and put them together with everyone else’s on a timeline.

Placing our ‘disruptions’ on a timeline.

It was really interesting to see all the different experiences. This will help the research (and me) to remember that any support we design has to be inclusive of all these different experiences. It has also tested that we are using the right language and words to talk about our experiences.

  • “Disruption” – problem, what went wrong, failure, not working.
  • “Adaption” – solution, what we did, advice, tips, hacks, resilience.

2nd half of meeting

The 2nd part of the meeting was to update everyone on our literature review.

Part of the research has been to look at what stories have already been published. We are doing this by reviewing all the research out there at the moment (called a literature review). As you might imagine, there is loads and loads out there. What we have done is shown how a timeline can be used to help organise all these different stories.

The notes in pink are from the published studies, green is parents at our meeting, and orange is from other parents not at the meeting. You can see how the timeline helps to organise all the different stories together. The overlap of pink/orange/yellow shows where we have a good idea what is going on at these times. However, where there is only green/orange (if you look near the middle), this shows us the parents are telling us something that is not in what has been published.

We have also published something called a ‘protocol’ (more details here). This is a plan of how the literature review will be done. We have almost finished the review, but it takes about 6 months to get published. I first sent it to be published last Summer! The research world can be quite slow.

Our literature review ‘protocol’.

We also just spent 15 minutes or so chatting at the end.

I have written a full report, and this can be viewed/downloaded from the PAG part of this website. I would like to thank everyone who came, or helped support the group. And I am looking forward to the next meeting:

14th June 2025 10am-12noon.

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