Barbara
Barbara has been part of a birth cohort study for over 70 years which started when her mother was pregnant. She feels privileged to have taken part and has always found her involvement interesting. She feels part of a club.
Barbara is widowed and a retired media researcher. Her ethnic background is White British.
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Barbara has been part of a birth cohort study for over 70 years which started when her mother was pregnant. It has always been part of her life from when she was a toddler taking part in medical check-ups. She remembers at primary school there were two or three others also involved in the study and recalls every now and then that she would be taken out of class for interviews or interviews would take place outside of school. This made her feel special. There was little participation needed for a while after she was eighteen, but the team kept in contact with her through an annual birthday card.
In her adult years, Barbara has completed occasional questionnaires which have been sent through the post to her. Each time the questionnaire focused on particular topics that were relevant at the time, such as, smoking and cancer or heart which has made it interesting, Now, they are looking at the ageing process. Questionnaires have been well constructed and easy to answer and she liked that it was in paper format because then she could look back at her answers and alter anything she wanted to.
Members of the team have occasionally come to the house to conduct some tests, such as blood pressure or memory tests. Her most recent involvement was a day of tests at a hospital, including physical and memory tests and blood test. She has always been given plenty of notice when they are going to send a questionnaire or ask for a medical test to be completed.
Barbara recently attended a focus group which was discussing the next stage of the research which may involve an MRI scan and the research team wanted to know what people thought about taking part in it. Although initially reluctant, she felt reassured after the meeting.
She believes her parents initially gave consent to the study, but she always felt it was important to do. Barbara says the study started in an era when if the government or medical institutions requested involvement you did it and she has never considered not taking part. She feels privileged to have been part of the study and has no concerns about the security of her data because she knows her name and personal details are kept confidential and separate from her test results.
Barbara has always felt well informed because of the way the research team have treated participants. As well as a birthday party for all research participants when they were 65 and 70, Barbara has received birthday cards from the research team each year with two or three pages of information about how the data is being used and who is using it with links to websites, which she describes as “absolutely wonderful” and has helped her to feel part of it, “like a club”.
She believes long term cohort studies can provide valuable information on the development of health conditions in people, particularly now people are living for longer, which may help with preventive measures for future generations.
Interview conducted in 2019.
Barbara is in a birth cohort study which has been extended several times. She thinks that securing funding to continue data collection has “always been an issue”.
Barbara is in a birth cohort study which has been extended several times. She thinks that securing funding to continue data collection has “always been an issue”.
I mean obviously this started with our mothers it was a study initially to look at pregnant mothers actually, pregnant women pre- sort of birth or whatever and I guess it’s always been part of my life. I, from a toddler just going to have these special check-ups so it’s just always been there. And it’s, at some points I think they, I mean this whole study, I think funding’s always been an issue and there’ve been gaps when I think once we got to seven or eight that was going to be the end of the study but then the Medical Research Council, whoever they were then actually got the extra funding to go onto maybe teenage and then it’s always, we’ve always thought that was going to be the end of it but it’s gone on and on.
Barbara’s parents agreed for her to take part in a birth cohort study. She thinks their willingness to enrol her was reflective of the attitude towards research at that time.
Barbara’s parents agreed for her to take part in a birth cohort study. She thinks their willingness to enrol her was reflective of the attitude towards research at that time.
I think really it was always very much, you know, this is something that you’re doing and it’s not a moral duty but I think I always understood that it was something that was important. You know, it was all stressed the importance of participating in these studies and of course in those days if you got, if our parents, you know, got a request or something, you know, you did it, you did it. There was no question about, you know, ‘I’m not going to do it, what’s in it for me?’ It started at a time when I think people felt an obligation really if the government or anybody had asked them to participate in a survey.
That’s a really interesting point actually.
Yeah because I’m sure these days, I mean certainly from my own work in research a different sort of research it’s quite difficult to get people to participate in anything, what with data protection and certainly I’m sure that parents, you know, with young children would probably find some excuse for not doing it.
As an adult, Barbara thinks that each time she chooses to return a questionnaire or arrange a visit is a kind of ‘re-consenting’ to the research.
As an adult, Barbara thinks that each time she chooses to return a questionnaire or arrange a visit is a kind of ‘re-consenting’ to the research.
But there was a point in my life for all the participants where, you know, when you became your own person, no longer a child you did have the option of saying no I’m not interested I mean, I think that’s, I think, you know, that’s the point where you, I suppose quite a lot of people may have dropped out because they said, “I don’t want to do this anymore, why am I doing this?” So I suppose effectively after the age of 18 was when I sort of started to participate in my own right.
And what do you remember about that? Was it a particular form that came where you were asked to re-consent or?
No I think, I suspect that there’s probably at every stage they probably have a bit of a drop out. Obviously the number of participants isn’t going to increase but people I suspect do drop out because they move, you know, if you move to Australia it’s a bit more difficult to sort of, you know, to participate, or of course some people die. I mean it’s as simple as that. So I think, you know, it’s a conscious effort, effort’s the wrong word, it’s a conscious decision to continue.
Each time?
Each time, yes.
Barbara hopes the birth cohort study she is in will help future generations, and it also gives her a “sort of MOT” of her health.
Barbara hopes the birth cohort study she is in will help future generations, and it also gives her a “sort of MOT” of her health.
Well I think it’s very, I think it’s important and I think it’s important epidemiology I think is the word. It’s really all the work that they’re doing on different medical conditions, I mean it’s not going to help me and my generation but it will help future generations, you know, what they can learn from us is going to be useful for the next generations, you know, for, for next generations to come. So, but also, on the other hand, these rather in-depth medical studies, particularly this one that they’re maybe going to do on- with MRI scans, they make it very clear that if we want to they will, this information will be shared with our GP. So there is a bit of a selfish sort of element that, you know, that, you know you’re getting, you know, a full sort of MOT which will be, you know, sort of transferred to the doctor which will be sent to ones GP.
Barbara’s participation varies; sometimes she fills in a questionnaire and other times they ask her to have physical and cognitive ability tests.
Barbara’s participation varies; sometimes she fills in a questionnaire and other times they ask her to have physical and cognitive ability tests.
Oh no not at all, sometimes it’s a questionnaire, some occasions it’s a sort of medical check with both physical and cognitive tests and the last test, the last one involved actually going to [university] and it was a day of various tests. So it, it does vary enormously.
Can you tell us a little bit about that day in [university]?
Yes I mean we had various things like sort of blood tests and I think maybe x-rays, it was really, I mean it was a full medical check and also, as I say some cognitive issues, you know, on memory tests etc. It seemed to be pretty comprehensive.
So, was it a sort of group of you went at once or...?
No, it was individually.
Barbara says the questionnaires she completes are constructed well.
Barbara says the questionnaires she completes are constructed well.
No they’re quite, I think they’re very well constructed. so somebody who’s actually been in the business, you know, you do get questionnaires from different organisations that are frankly just a waste of time because they’re not properly constructed but these are always well constructed.
The flow of the questions and also there’s an obvious, there’s an obvious, I say an obvious answer but if you’re not sure or if, you know, they do seem to cover all eventualities, you know some, some questionnaires that you get you think, ‘Well that’s not appropriate for me, why are they asking it?’ but this, all the questions are always appropriate.
Barbara likes having the paper version of the questionnaire to fill in. She can reflect more on her answers and make changes more easily.
Barbara likes having the paper version of the questionnaire to fill in. She can reflect more on her answers and make changes more easily.
The format’s the same so, you know, there’s always a covering note just checking your address and everything that you’re still living where you’re living. So I think, I think it’s, I think we’ve just got used to it over the past 70 years.
Apart obviously the classic demographic information is more or less the same each time. It covers lots of things like, you know, I think one of the questions is, you know, how you’re, how you’re feeling, are you more confident than you used to be or less confident than you used to be that’s something that I think is probably a bit of a leitmotif something that’s that goes through each time. But as I say you can just tell that they’re interested in a particular aspect or two or three particular issues really each time, and they vary from time to time.
They always come as paper questionnaires, that’s interesting, you know, it’s never been done electronically, maybe they think because of our age that we, you know, that we may be less conversant with electronic techniques I don’t know, I never thought about that.
[Laughter] And you’re happy with the paper version, or would you?
Happy with the paper version. I mean, one could do it electronically but I think somehow the paper version is quite good because you can think more about it, you can sort of reflect and look at the questions in more depth. I know doing other things online you just go through from sort of frame to frame and don’t bother to think, ‘oh maybe I shouldn’t have said that, maybe I didn’t think that way.’ But with this, you know, you know that if you, if you think, ‘no maybe that wasn’t quite right,’ you can go back and alter it easily.
Barbara has advised the researchers of a birth cohort study she is in about a sub-project they are planning.
Barbara has advised the researchers of a birth cohort study she is in about a sub-project they are planning.
And then last year I did participate in a focus group. It was about this time last year which was a group and there-, they were really discussing almost the next stage and they were planning again, whether the funding’s there to do things like MRI scans on people and how we would react to that because I think a lot of people, things that are more invasive, I think some people would be quite reluctant to participate. So that was quite interesting on how we felt about it and how they could actually, I suppose sell it for want of a better word to us.
And what were your feelings about it?
Well I, you know, I, I’m, actually I was-, interestingly a lot of us felt very nervous about the thought of having an MRI scan just for, for research purposes. It’s one thing having something like that if you need it but they were very reassuring and I think quite a few of us who might have been reluctant but came away from that, I mean it was just a couple of hours and the lunch I think, just, you know, came away feeling quite confident and I think we, you know, would participate.
Barbara hopes funding for cohort studies continues because, now people are living longer, they are important in contributing to a better understanding of how to prevent health conditions developing.
Barbara hopes funding for cohort studies continues because, now people are living longer, they are important in contributing to a better understanding of how to prevent health conditions developing.
Oh I’d say, I’d actually say keep up the good work and as I say I just hope with all the sort of economic uncertainty that they’re able to get funding to continue because I think, you know, with more of us living longer I think this stage of our lives the research is almost more important than some of the earlier things.
And do you think that sort of, you know, putting money into a long term cohorts study has benefits over just funding a short term study?
I think so because I think there’s a lot of preventative work that can be done. I mean they-, with this study thinking particularly about the, the sort of dementia aspect, I mean they will be able to look at us from the age of 50 and, you know, when they see who has dementia, who gets dementia, Alzheimer’s; there may be trends. There may be things that they can spot that about when we were 50, you know, maybe something completely, at the moment seem completely irrelevant to, you know, the increase of dementia but they may be able to see trends and see, you know, certain things that, you know, conditions at 50 were going to affect the likelihood of us getting Alzheimer’s and dementia and be able to correct, be able to deal with this for subsequent generations.