New type 1 diabetes research project. Help requested!

Hello forum members,

My name is Paul and I work for a research organisation called Oxford Outcomes. I'm in the process of trying to recruit individuals with type 1 diabetes (or parents of young people with type 1 diabetes) for a new research project. I've discovered your forum on the internet (and after reading your READ BEFORE POSTING) want to find out if anyone would be willing to help us.

The research is aimed at examining the quality of life impact of type 1 disease for individuals aged up to 35. We are hoping to be able to interview (preferably face-to-face) diabetics or parents of diabetics with the aim of trying to explore their experiences first hand. The academic literature on the subject is quite extensive but largely reflects the approach of data collection through questionnaires. We would like to address this issue through open-ended interviews allowing people to convey their thoughts and opinions of what having the disease entails. Ultimately this research will be compared with the existing literature and the opinions of medical experts to try and give the fullest picture possible of what it is to be a type 1 diabetic. These "pictures" can then form the baseline of the experience and new treatments in development can evaluate any potential impact they may have on diabetics lives.

If you think this is interesting, we are hoping to hold the interviews in Oxford (or the surrounding area) and can provide £25 to compensate individuals for the interview time (probably 30 minutes to an hour depending on what you have to say!). We can schedule the interviews for a time that suits you and would welcome any responses. You can reach me (Paul S) at 01865 324930.
Hope to hear from you soon.

Thanks for your time.

I'd be happy to answer any queries anyone has about the project on the board.

Thanks again.

sixfoot said:

Why are you only interested up to the age of 35 ?

Click to expand...

Thanks for the question. The reason we have the age limit is that we are looking at the potential effects of treatments which would ultimately aim to limit beta cell destruction in type 1 diabetics. As most people over this age currently with type 1 diabetes will have been diagnosed for some time, they would probably not benefit from treatments of this type. I hope this makes things clearer.

If anyone would like to participate in the study, they can feel free to contact me here rather than at the number above if this is easier.

Thanks

Paul

I am sorry if I have caused any confusion. Please let me try to clarify...

What I am interested in are the experiences of people who have to live day-to-day with Diabetes type 1 (what problems it causes, the challenges they face, hopes and fears - whatever people think that diabetes is or isn't for them). I don't want to be too leading, the point of the research is to try and give diabetics the opportunity to relay their own perceptions and opinions without taking a checklist format of 'are you worried about x?'... 'does your diabetes affect y?'.

Of course, anyone is going to be interested in having new and effective treatments produced - that goes without saying. But the extent to which any treatment has value to an individual depends upon what it influences. If you had a hypothetical drug that gave say, improved glycaemic control it could potentially influence many factors directly and indirectly (decreased chance of complications, increased dietary freedom, decreased anxiety, increased exercise capacity etc). Without understanding what it is that diabetes is or does to people, you cannot ever make a sensible assessment of what change may arise as a result of a treatment. We are tying to capture a picture of the condition from the perspective of people who have to live with it. It is all too easy for a doctor to look at your Hb1Ac and go 'you are fine'. It is not really representative of the human experience and does a disservice to patients who have to endure significant hardship as a result of a disease they have through no fault of their own.

I hope this helps make things clearer. Please feel free to ask any questions or contact me at the number in the original post.

Paul

I am undergoing a CRB check at the moment but this is for another project which will involve working directly with children. I am well aware of the criteria for conducting research (I've done it whilst employed by a university and industry) and there is no requirement for this work with an adult population (I am only looking to speak to people aged 18-35). Once the CRB is completed I would be happy to provide the reference number, but as I said, it really isn't necessary. This kind of interviewing is generally covered by the practice guidelines for market research (unless recruitment is through an NHS site in which case REC approval is required).

Thanks for your concern though, it is always good to be careful.

Paul

Hi Donnamum,

Thanks very much for expressing an interest in the research project. Unfortunately, due to the nature of the work, I need to conduct the interviews in person. I am based in Oxford and would be willing to travel to locations within the surrounding area if you are local. If this isn't the case, then unfortunately I don't think we'd be able to talk.

Thanks again for the offer of assistance,

Paul

Just a quick bump to say that we are still recruiting people who are interested in talking about their (or their children's) experiences of type 1 diabetes. If this sounds intersting to you - please get in touch!

Thanks,

Paul