Teresa – Cohort studies

Teresa is part of a birth cohort study. She recalled a time when a research nurse unexpectedly threw a packet of matches at her to test her reflexes. She thinks the process of being consented into research can be overdone.

Teresa is part of a birth cohort study which follows everyone born in the space of one week in 1946. Her memories of her early participation are very vague, but she remembers tests at school. Her strongest memories of her participation are from when she became a mother. She thinks she remembers this because she had to keep a food diary for about two weeks. Another memory she has of her participation is from a visit with a research nurse during the 1980s. During this visit, the nurse unexpectedly threw a pack of matches to Teresa to see how her reflexes were. She described this experience as being very odd.

As well as filling in questionnaires, a research nurse has come to Teresa’s house about once every decade to interview her and take samples. She remembers having an appointment about 10 years ago where she had to go to the hospital. Teresa was happy that the research team paid for her stay in a hotel. However, she was not happy about having to fast throughout the evening until the next morning so that she could have her blood taken. Teresa is aware of a proposed sub-study that would involve the research team taking a participant’s blood before, during, and after breakfast. She thinks this would be invasive, but sees it as a “small price to pay” to help further medical knowledge.

As Teresa does not remember much about her early participation in the cohort study, she would like to access her data. She has been told by the research team that she can do this. Teresa is motivated to continue her participation in the cohort study because she feels that it will be a legacy of her life. She is also interested to see how her life experiences compare to other members of the cohort study and future generations. Teresa has met other cohort participants in group meetings where she has talked about her experiences of taking part in the study.

Teresa’s feels the process of her giving consent in some research studies is excessive. She wishes that there was a way to streamline consent so that she would not be asked a dozen times if she is happy to participate. She links this to respecting people’s time. Her message to others who are invited to take part in a study like hers is to “take the opportunity, it’s beneficial”. She thinks it can be helpful to society and interesting as a participant to learn more about your body.

Interview conducted in 2019.

Teresa, who takes part in a birth cohort, remembers thinking that keeping a very detailed log of her diet for the study was a bit invasive.

Gender Female

And I don’t remember much though in my teens to be quite honest. Whether there’s just so much else going on, I don’t know, but I imagine I must have made some input and carried on. I remember it more later when I’d become a mother and there seemed to be a lot then, a lot about diet. Sometimes the questions were quite invasive because you had to acquire a lot of material, you had to keep a record of your diet for two weeks you had to write down the recipes if you’d made something, you had to include absolutely everything, it was really detailed.

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Teresa had been part of a group of volunteers to try out a planned subproject within her birth cohort study. She found it tiring and unpleasant in some ways, but also thinks the research would be interesting.

Gender Female

And they took us round because where, where this, where we had the meeting in the university building they’ve got other resources nearby, very, very well equipped and they took us all through them and showed us, and they showed us the tests and they did some of the tests. You would think, you know, you would have hoped to be alert to do them, they’re going to be interesting to do but I think it will be also quite tiring, three days.

Yeah, absolutely.

And also a bit stressful because frankly it’s not great fun being mauled around really and they will be taking lots of blood tests. I mean they made it very clear that, you know, you’ll start off by not having breakfast and then when you did eat then they would actually take a blood test before, they would take a blood test in the middle and I mean that’s not great when you’ve got some vampire sort of hanging around you while you eat [laughter]. but it’s, I think it’s a small price to pay really because it really is important that information is passed on and it’s also really fascinating.

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Teresa has been part of a birth cohort study for 74 years. She thinks the study team have communicated very well with her. She knows what’s going on with the study and who to contact.

Gender Female

I think that they communicate really well, I mean you’re not inundated you usually get something with the birthday card, you know, when we, when we had this get together a few years ago that year they sent a booklet summarising, just giving a little summary of the whole thing from the beginning which was really interesting and it does give a list of all the papers and it’s not difficult to find out more if you want to. And there was once or twice were I sort of rung up to discuss things, it’s been easy to get hold of somebody.

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The activities Teresa has been asked to do varied over the timespan of the birth cohort. She remembers the questionnaires were sometimes long and detailed.

Gender Female

Then later on I remember doing little tests, little intelligence tests and things. But you, you sort of take that as the norm really, I mean, I think you, well certainly I did as a child sort of took what came. And I don’t remember much though in my teens to be quite honest whether there’s just so much else going on I don’t know, but I imagine I must have made some input and carried on. I remember it more later when I’d become a mother and there seemed to be a lot then, a lot about diet sometimes the questions were quite invasive because you had to acquire a lot of material, you had to keep a record of your diet for two weeks. You had to write down the recipes if you’d made something. You had to include absolutely everything; it was really detailed. As time has gone by, it’s been very clear that the questions are following a certain line of research and for me it’s, it’s quite interesting I, there was a whole section where they were asking about how hot do you drink your drinks, how cold do you drink your drinks and I think that’s leading to something very specific.

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Teresa says that processes, like giving consent, can be overdone in some studies and that repeatedly asking isn’t respecting people’s time.

Gender Female

I think it can be overdone, I really do, I think look at a way of streamlining it because it’s, it can be really irritating. I just think it ought to be, you know, a process where the question is asked once and not the dozen or so times it feels like and I suppose that’s partly to do with respecting people’s time.

And, you know, it clearly needs to be made in such a way that it’s understood. But it’s a little bit along the lines of every single thing you do now like you’re asked to give a feedback and it becomes a sort of manacle in the end [laughter].

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