Julie - Interview 13

Age at interview: 45

Brief Outline: Julie volunteered to take part in a clinical trial, the EAT study, looking at babies and young children developing food intolerances. Julie did not qualify and was turned down. Although disappointed, Julie is very supportive of clinical trials in general.

Background: Julie aged 45 years lives with her husband and son aged three months. Julie works in higher education and is currently on maternity leave. Julie volunteered to take part in a clinical trial and was turned down.

More about me...

 Julie, aged 45 years, lives with her husband and son aged three months. Julie responded to an advert in the Bounty e-mail newsletter inviting mothers of babies under the age of three months to take part in the EAT study looking at babies and young children developing food intolerances. Because Julie experiences mild food intolerances, the study was of interest to her. The criteria for taking part included babies less than three months old, babies had to be completely breastfed and mother and baby had to be able to travel to London once a year. Unfortunately Julie did not meet the criteria and was thus not eligible to take part. Because her son had three bottles of formula when in hospital, this disqualified him from taking part. Julie’s disappointment at this reflects her personal interest in the study. Julie had hoped that the trial would be of use to her and her son because of her own mild food intolerances and would help to manage her son’s weaning and diet. However, Julie recognises the need for having inclusion and exclusion criteria and is very supportive of clinical trials in general. She says' 

 

” My husband and I are academics and so we believe in putting back into the system and we know that researchers are very often short of subjects and so we like to help if we can. I’ve been a blood donor all of my adult life, I’ve benefitted from medical science myself and so it’s a way of putting back into the system.”

 

However, in terms of putting her son forward for a clinical trial, this would depend on the amount of discomfort for him and the potential side effects and risks involved. Thus, she would be less inclined to consent for her son to take part in a trial that required some level of physical discomfort. She recognises the difference between volunteering herself to volunteering her own son. However, Julie would encourage her older children to take part if they wanted to and explain to them that there may not be any personal benefit rather it may benefit somebody else in the future.

 

If Julie could change one thing about her experiences in taking part in clinical trials, she says that one of the reasons for taking part in trials is her interest in the area, so for her it would be good to be given a summary of the results at the end of the study. In giving advice to other parents, Julie says'

 

“Because there are still so many things which affect our children very, very seriously and so if we can contribute to that research and it helps kids, it helps keep our children and the children of future generations more healthy then we should consider can I help, can I volunteer my child to help with that.”

 

When your child does not meet the inclusion criteria to take part in a clinical trial, it can be...

 I was I was invited to take part via the Bounty e-mail newsletter and it’s the EAT study looking at babies and young children developing food intolerances and because I have some food intolerances myself it was something I was quite interested in, and so the babies had to be less than three months old I think, be completely breast fed and you had to be able to get up to London once a year. And unfortunately I didn’t qualify because my baby had three bottles of formula when he was in hospital so we were turned down.

 

Right and how did you feel about that?

 

A little bit miffed. A little bit disappointed because I was interested in the trial and I thought it could potentially be of use to me and my baby because I have these mild food intolerances so anything which would help me manage his weaning and his diet would be of interest to me.

 

So I was invited to take part via the Bounty e-mail newsletter for new mums and it’s called the EAT study and it’s about food intolerances in babies and young children. And as far as I remember they carefully introduce foods when babies are weaning and look for reactions to those foods and that’s why they need babies who have been completely breast fed so that there isn’t for example a hidden reaction to formula.

 

Well the EAT study it was in an e-mail which went out, I presume to lots and lots of new mums who sign up for the Bounty Packs and their newsletters. And so it just gave a brief explanation of the study and the criteria and I sent an e-mail just on that information alone. So I never got as far as looking at the information pack. Yes, yes. And saying your baby had to be less than three months old completely breast fed and able to go up to London once a year.

 

Oh right, okay. So did you, so at that point when you read the information, was it at that point you thought no I’m not eligible did you?

 

No I thought I would be eligible but I did tell them that my baby had had three bottles of formula while he was in hospital and they rang me to say that unfortunately that disqualified him from the study.

 

Yes, but you would take part in other studies if there was something?

 

Yes, yes suitable things. I think for my baby I would be even less inclined to do things which required physical discomfort for him, for example taking blood tests and things like that. I’ve volunteered to do that myself with some of the studies I’ve done. When I had an MRI I had to have two cannulas inserted, you know, which is, which is mildly uncomfortable. But I would think twice before I volunteered the baby for that kind of thing. I think in his case there would have to be a much more direct benefit for him for example to have blood taken than just the warm fuzzy feeling you get from helping out with research, which might with research which might ultimately not have a direct impact on your own health or wellbeing.

 

So it’s quite a different thing isn’t it to volunteer yourself to take part than to volunteer your child to take part?

 

Yes I think so yes and I know that the, the medical and healthcare that brought him into this world and is keeping him healthy is important and it’s very often research based and so on. But I think I have a duty of care to him to think carefully about what I might be subjecting him to. And of course in the case of my baby I would also have to discuss it with his father before I volunteer him for anything. But for example I’ve volunteered him for the local university to do some psychology studies which are non invasive and usually they’re a

Helping other children and helping increase knowledge are good reasons for considering to enrol...

 I think in our country we have all benefitted from our health service and from all of those people previously who have given their, their time and tissue samples and effort and so on. And who knows what research breakthroughs we can contribute to if we can put a little bit of effort into the current research projects at the moment. Because there are still so many things which affect our children very, very seriously and so if we, if we can contribute to that research and it helps kids, it helps keep our children and the children of future generations more healthy then we should consider can I help, can I volunteer my child to help with that.

 

Yes, yes I think we all expect to be able to go to our A&E department in case of an emergency and that blood will be available and yet so few of us are actually blood donors. And if you stop and think about it how are these researchers going to be able to do clinical trials unless some of us actually volunteer for it?

 

I would just like to encourage more parents to consider taking part, it might not always be suitable for your child; you might decide that you don’t want to put your child through a particular trial. But if more of us even considered letting our children take part then we’d make such a positive impact on research which of course can only help improve our children’s lives and their health.

 

Even though Julie's son was not eligible to take part in a trial, she would consider another...

 Yes, yes suitable things. I think for my baby I would be even less inclined to do things which required physical discomfort for him, for example taking blood tests and things like that. I’ve volunteered to do that myself with some of the studies I’ve done. When I had an MRI I had to have two cannulas inserted, you know, which is, which is mildly uncomfortable. But I would, I would think twice before I volunteered the baby for that kind of thing. I think in his case there would have to be a much more direct benefit for him for example to have blood taken than just the warm fuzzy feeling you get from helping out with research, which, which, might with research which might ultimately not have a direct impact on your own health or wellbeing.

 

So it’s quite a different thing isn’t it to volunteer yourself to take part than to volunteer your child to take part?

 

Yes I think so yes and I know that the medical and healthcare that brought him into this world and is keeping him healthy is important and it’s very often research based and so on. But I think I have a duty of care to him to think carefully about what I might be subjecting him to. And of course in the case of my baby I would also have to discuss it with his father before I volunteer him for anything. But for example I’ve I’ve volunteered him for the local university to do some psychology studies which are non invasive and usually they’re actually fun for the baby involved. Yes, yes. No I think if it was going to be uncomfortable for him, I think I’d have to be persuaded of the benefit, for example if he had a rare blood group for example and they were, there were few people they could call on for a trial then I would be more persuaded to allow a little bit of discomfort for him if it was going to be of very great benefit for a large number of people.

 

Julie would support her son if he wanted to take part in a trial in the future, and explain that...

 I think I’d encourage my older children to take part in trials if they wanted to and I think I’d explain that they wouldn’t necessarily be any personal benefit to them but you don’t know if what you’re going to do is to benefit somebody else in the future. So yes I would, I would encourage them to take part and to think of themselves as citizens with a, with a contribution to make.