
Views on future trials
- Age at interview:
- 38
- Sex:
- Female
- Background:
- Ruth is married and mother of George aged 22 months. Ruth works full time in Higher Education and describes herself as White British. Ruth declined to enrol her son on a swine flu vaccine trial.
I think I mean it wouldn’t dissuade me just because I said no to this particular trial I don’t think it would dissuade me from taking part in other clinical trials. If I thought they were of either benefit to the greater good or whether they were of particular benefit to me or my family but I think I’d still go through the same decision process, I’d still source out the information and make sure I was happy with the decision before I went through with anything really but I think that’s more me rather than, you know, the fact it being a clinical trial.
- Sex:
- Female
- Background:
- Tina is married and mother of three children aged 9, 11 and 18 years. Tina is a self-employed Management Consultant and describes herself as White British.
Yes, definitely. I mean definitely, I mean I thought the information was very good. I think that there is the opportunity to ask questions. I thought that you know if you like the, the patter that we were given about the origin of the vaccine, the way that it had been used up till then and the potential risks were very clear. And I, and I also felt that had we wanted to explore that in any more detail or ask more questions, then the medical staff would have been happy for that and would have been able to answer questions. So yes, I mean I think it is a yeah, it was a very positive thing.
- Age at interview:
- 39
- Sex:
- Female
- Background:
- Alison, aged 39 years is White British, works part time as a music teacher and lives with her husband and three children. Her son was diagnosed with Intrauterine Growth Restriction around 22 weeks. Alison gave birth to her son at 30 weeks; he weighed 2lbs.
Yes, I would. I, I think I’m slightly, not cynical, that’s the wrong word, but maybe slightly more pessimistic, or maybe that’s a bit too strong a word, about outcome of things now, and just think, “Well, we could take part in something that might show that it’s pointless.” And, and that’s worthwhile in itself, but not always to think that everything you do is just suddenly going to have this massive knock-on effect in medicine and open lots of doors. Which sometimes things do. But just be a bit more realistic I think or, you know.
- Age at interview:
- 49
- Sex:
- Male
- Background:
- Steve took part in Cohort Asthma Study after the birth of his son. Study continues and his son has now taken part in the second stage of the study to look at allergies.
I would like to think that any trials that involved possibly days, mornings, afternoons, even overnight at a hospital that by the time we’re at that stage they’re freely giving you the information, and we know roughly that yes, things can go wrong, things don’t always go according to plan. But we, I would like to think that isn’t the norm. Yes, we all know that things can go wrong and it is just bad luck. They’ve not gone out of their way to make you stay in hospital even longer because it’s not what they’ve wanted you there for. So yes, I would like to think that providing they came to me with all the information that I think is relevant they could answer all my questions, then I would be saying to Jhon, “I think go for it” and that he would. I would like to think he’d say yes, but I can’t make him. I don’t have that right, even though I’m his Dad. And, he’s a minor. I think he’s old enough, maybe too wise, but at the end of the day the choice is his. And I’d like him; I’d like to think that he knows that I wouldn’t put him forward for anything that was going to cause him unnecessary discomfort.
- Age at interview:
- 44
- Sex:
- Female
- Background:
- Lena, aged 44 years is White British and married with three children ages 11, nine and two years. Lena works part time as a child-minder. Lena consented for her youngest child to receive the swine flu vaccine as part of a clinical trial.
Yes, with as much information that we had yeah. We would want as much information. I mean I say yes, but you would obviously still look into it. It’s not something you, you know you just say oh yes blindly. But we would consider it again, yes.
- Age at interview:
- 41
- Sex:
- Female
- Background:
- Jane, aged 41 years, is White British and works full time in Primary School Education. She lives with her husband and their daughter who is 13 years of age. Their daughter was diagnosed with Juvenile Diabetes at the age of 11.
Yes, I would consider anything again, yes, to help other people, definitely.
- Age at interview:
- 29
- Sex:
- Male
- Background:
- Paul is aged 29 years, is White British, a full time homemaker and lives with his son aged 8 years.
- Age at interview:
- 38
- Sex:
- Male
- Background:
- Chris aged 51 and Nikki aged 38 are White British, married with four children ages 8, 6, 3 and 10 weeks. Chris is a retired fire office and Nikki is a housewife. Their eldest daughter has severe asthma and a severe adrenal deficiency.
Nikki' I think it, I think it would depend. I think we would get, gather all the information is what we tend to do [isn’t it?] and say, you know, “What’s it about? Why, why are we doing it? How invasive is it?” And, you know, for the likes of Sarah you –
- Age at interview:
- 35
- Sex:
- Male
- Background:
- John is married with four children. John left full time employment to become a full time carer to his daughter Chloe who has cerebral palsy and global developmental delay and his remaining children. John describes himself as White British.
Yeah, yeah, but obviously depends what it is. You know, like I said earlier if we’re looking at taking a lung then you know whatever then that’s a different kettle of fish. But as long I guess as long as it’s minimally intrusive not likely to have any have any detrimental impact or effect on her then yeah, no problem.
- Age at interview:
- 43
- Sex:
- Female
- Background:
- Linda, aged 43, is White South African, works part-time as a Staff Nurse, is separated and mother of three children; all born in the UK; ages 7, 9 and 15 years. Linda's youngest child was diagnosed with a heart condition 12 hours after she was born.
And now, that’s a, I mean because at the hospital where she’s seen for her heart, it’s sort of sister hospital does trials for nuts and that’s something I would take her for. They haven’t offered it to her yet but that’s a clinical trial where they do that where they rub a bit of nut on the lip and you have to, it’s all done in intensive care under very careful monitoring, and then systematically increase over a few days the exposure to nuts and that’s meant to, they have said that they probably wouldn’t offer it to her because she’s allergic to three kinds of nuts so that would be, you know, but then might peanuts which is the most severe allergy they might do. And that’s something I would consider but that would purely be for her benefit [laughter] yes, you know, that’s yes so that would be nobody else would benefit from that, that would just be her, you know.
- Age at interview:
- 39
- Sex:
- Female
- Background:
- Vicky is aged 39 years, is White British, married with three children all under 12 and has full-time employment. Her 9 year old daughter was diagnosed with diabetes at the age of 2.
There would, there would be a point. But I think it’s difficult to know what that point would be. Because I mean obviously a change in her treatment which may have direct effect on her health, then I think we’d sort of have to look into it more and understand more about, you know, the development of that particular drug, say, beforehand and how far they’d got and whether it was likely to be successful and, and things like that. I think, yes, anything which would have an impact on her health, then we’d consider. And I mean I don’t know what the point would be where we would say no, because obviously the only way that you get to see whether new things work is by trialling them. But obviously it’s that balance, isn’t it? Between letting somebody else do it.
- Age at interview:
- 37
- Sex:
- Female
- Background:
- Lucinda, aged 37 years, is a single mother to her son Toby aged 10 years. Lucinda describes herself as White British as works fulltime in the legal profession.
Depending on what it was, yes. I don’t have a problem with research. I think it’s a really important part; it’s a major part actually in science. And I know through my own work, collecting data is just a must. So whatever can help in the future, I think. And I was quite surprised actually when we were told that childhood migraine hadn’t been researched. I think if it’s been about for as long as it has, I was, I was really quite shocked that it hadn’t. I thought it would have been a lot more advanced. But I do understand that there isn’t much they can do. Because, as we were told, as, as Dr explained to Toby, there isn’t physically anything wrong with the brain, it’s just the cells. So there isn’t much they can do.
- Age at interview:
- 27
- Sex:
- Female
- Background:
- Catherine is married and mother of their first child Mikey. Until taking maternity leave Catherine worked full time as a Social Worker and describes herself as White British. Catherine was invited to enroll her son on two clinical trials.
One of the studies I was going to be, participate, in before we knew about my genetic problem was a progesterone trial when you when you got pregnant you’d be given progesterone. My issue with that really was I I’d had three miscarriages by then and my issue with that was that if I was in the, the placebo group I wasn’t getting the progesterone and when you’re talking about whether it’s going to help you keep a baby that’s sort of a huge, it’s not like you’re taking a you’re taking a drug to see if you think you know does it work against aspirin. It’s like if I have this drug I might keep the baby and if I don’t I might lose it and if I’m in the placebo group I won’t know and I, and that would have been a really tough call to make. As it was I wasn’t accepted because I found I had an underlying condition. So I guess it all depends, it’s like if you were saying if he had cancer and you wanted to give him chemotherapy or a placebo group why would you want your child to not have the treatment because you were in the placebo group and you don’t know and then it it’s really tough isn’t it. I guess you really have to think about each thing as you come up to it; it’s not something you can just say we’d be in or we wouldn’t be in. It would depend on the circumstances.
- Age at interview:
- 45
- Sex:
- Female
- 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.
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.
- Age at interview:
- 45
- Sex:
- Female
- 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.
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.
- Age at interview:
- 35
- Sex:
- Female
- Background:
- Rachel is 35 years of age, White British, and lives with her husband and their three children aged three, five and seven years. Rachel works part time as a Research Fellow and trial manager for a Clinical Trial.
It would depend what the trial was for as well. So it’s not just the level of risk. It would be risk-benefit really. So it would be whatever benefit, and not, I don’t just mean that to my child, but I mean sort of society benefit as well, what the overall benefit would be. Obviously the level of risk is relevant as well. And again I think it would just depend so much on what the trial was and what it was for.
- Age at interview:
- 38
- Sex:
- Male
- Background:
- Chris aged 51 and Nikki aged 38 are White British, married with four children ages 8, 6, 3 and 10 weeks. Chris is a retired fire office and Nikki is a housewife. Their eldest daughter has severe asthma and a severe adrenal deficiency.
Nikki: Yes, but as I say, the number from the nurse and then to the consultant that she referred us to, that, you know, that we’ve got mobile numbers, emails, everything. You know, they’ve been so approachable and nothing’s been any trouble. So, you know, we were phoning that nurse most days [weren’t we?] in between going to see the consultant and that. And, and she was great. It never felt like, you know, “Oh, it’s them again.” It was, “Right, okay, what’s wrong?” Even when we repeated questions or I’d found, you know, because she said, “Don’t go on the Internet and, you know, looking at Wikipedia for adrenal insufficiency, because you’ll get terrified.” But you can’t help it. You’re going to do that. You know, it, it’s like this site. If I’d have known that this site was there it would have helped us, wouldn’t it? Just to, to have that realism that somebody going through it and come out the other, the other end. Because you, you just, our world just went to pieces, didn’t it?
- Age at interview:
- 46
- Sex:
- Female
- Background:
- Sandra aged 46 years is a full time housewife. She has five children. One of her daughters was diagnosed with juvenile dermatomyositis, a rare condition that affects children under the age of 18 years.
If it had been a change of, a different treatment, or, wanting to try a different treatment for her, would you still have been quite as keen?
- Sex:
- Male
- Background:
- Dr William van't Hoff is Co-Director Medicines for Children Research Network.
Studies show that most families and young people would like to be told about research that’s relevant to their condition or their family. But often health professionals, doctors or nurses are reluctant to place an extra burden of research on a family that may have a lot of other worries about the disease or their child at that time. Indeed there are studies coming through now which indicate that families who wanted to take part were not given that opportunity. It’s really important that families and young people who want to know or are interested if there are research opportunities to improve their care speak up and indicate to their doctors and other health professionals that they are interested in hearing about the research. It doesn’t mean they have to take part, but they may well want to know what’s going on and think about the opportunity to participate in that study. And doctors and nurses need to recognise that families are increasingly interested in hearing about the research opportunities and giving, being given their own choice to decide whether or not they can participate.
Last reviewed July 2015.