Taking part in Research
One of my 2024 goals was to take part in research to contribute to and improve an area that means a lot to me. Last week I took part in a research focus group as a parent with lived experience. The IMPACT study run in partnership with Great Ormand Street Hospital for Children and the National Institute for Health Research project aims to improve the lives of children, young people and parents of people living with any paediatric rheumatological condition.
This is a great cause and something close to my heart as my daughters both have JIA and are in different stages of their Arthritis journey.
The other thing that attracted me to this one is that the research study is to make and test a chatbot to support people with these conditions.
Two ticks from me then.
1. Technology
2. A worthy cause.
Onto how it went then.
An MS teams call started with the research team and dads of children with paediatric rheumatological conditions. We started off with a round of introductions where we introduced a little bit about ourselves, our children and the condition they have.
We then went into a discussion about what are the priority areas that could be supported by new technology and then voted as a group. This fed into a wider project focus group that is growing.
We had a conversation about the challenges we faced as dads with children with conditions.
We spoke about the challenges faced getting a first diagnosis, understanding the commitment required to support the condition and what the future looks like for our children.
The discussion was honest and sometimes difficult to take in, reflecting on the challenges faced and sharing what we could do differently if we had our time again. The time flew by, and I was genuinely happy to be part of this group, looking forward to the results and was able to contribute some of my own experiences to the group.
A common thing that came through strongly in the group was how we as parents/dads had to be strong for our children where at times we were feeling the pain and upset too of our children. It’s a thing that men don’t talk about this stuff usually, so it was great that we had a good mix of age ranges and experiences, and we spoke openly, the good and bad.
Another topic that came through strongly was the amount of times we as parents had to challenge the system often repeating our story and pushing for the right care by the right care professionals. Sometimes, getting stuck in the system being in the wrong care setting or being stuck between settings was a problem and delays in diagnosis too.
I’m looking forward to seeing the results of this project and am happy that I’ve played a small part in it.
This is a very short write-up but for anyone who can help with research please do so, you get a great feeling and helping towards a good cause. The more people who take part the better the result may be.
