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Justin Talks About His Role in the CF Consumer Reference Group

Justin and his wife, Sharon, have two children Jessica, 6 years, and Grace, 4 years. Grace has cystic fibrosis (CF). She is also very independent, outgoing and currently enjoying her first year in kindergarten. Justin became part of the CF Consumer Reference Group over 12 months ago.

Why did you decide to join this group?

I saw a letter regarding the mask requirement during clinic visits which was an initiative implemented after consultation with the CF Consumer Reference Group.  It got me thinking about who and what the group is. I spoke to Ali at clinic and Lisa at Telethon Kids Institute and they explained more about the group and that they were looking for dads.

What are the benefits of being part of this group?

As a parent, it’s knowing that you have input in to proposed trials and being able to discuss the various positives and negatives that may not have been considered by the researchers. The researchers are passionate about what they do, but the input from parents helps inform a collective, practical response that can help engage children when they do the research. Also, ongoing improvement in regard to parent/hospital relationships. We feel listened to and there is a genuine desire to make things better in clinic and with research.

The group meets every three months; what are the meetings like?

Very structured and professional, however, also very relaxed. It’s also very punctual. Sophie, the chairperson, has CF and she keeps things on time which is great as we know we’re going to leave by 9.00pm. There are also a couple of presentations from researchers; they discuss potential protocols and how they can best work with parents and children. There is also a question and answer session at the end with André and Ali from the respiratory team at Perth Children’s Hospital, so we can save up some questions for them.

Is there much of a commitment to do things outside of the meetings?

Not really. It’s just listening to the presentations, giving feedback, and suggestions and queries are answered in the meetings.

What would you say to other parents considering joining this group?

If you’ve got the time, definitely consider it. It’s very informative and you can have input into what affects your child and other children with CF. It’s nice to meet people who are involved in the research. A lot more is going on than most of us are aware. It’s really inspiring to hear about this research into best treatment or potentially a cure. The group is primarily mums so it would be great to have some more dads along.

 

Interview from RED Magazine, Edition 3, 2019.


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