Margaret – Cohort studies

Margaret is part of a birth cohort study. She has met other participants recently at gatherings. She is very proud to be a part of the study and has no concerns about giving consent to be in the research.

Margaret is part of a birth cohort study which follows people born in the space of one week in 1946. Margaret’s mother enrolled her into the study when she was born. She remembers doing written and medical tests as part of her participation in primary school. Margaret says that the tests were not too worrying as she considered them “just a part of life”. She particularly enjoys receiving birthday cards from the research team. She stopped receiving the cards for a year or two; she thinks that this must have been sad for those people in the study for whom it was the only card they received. However, she started receiving them again after some participants told the research team that it was the only birthday card they received.

As well as the birthday cards, Margaret receives an annual questionnaire from the research team. In these questionnaires, she is usually asked questions about her health and social wellbeing. She remembers answering specific questions like ‘Have you been in hospital recently?’ and, ‘Have you had any health problems?’ Sometimes Margaret is asked to organise a visit from a research nurse so that she can have her blood pressure, height, weight, grip, and balance measured. These visits were quite frequent at one point but now they happen less often.

While Margaret was a child, her mother consented to her participation in the cohort study. Margaret provided consent for herself when she was about 21 years old. She does not have any concerns about having given consent to be in the study and she is happy that her mother enrolled her into the study. Margaret thinks that she is particularly motivated to participate in a cohort study like this because her parents both worked in medicine. She has never considered leaving the study.

Margaret had not met any other participants in the birth cohort study until recently. When she and the other participants turned 60, for example, they were invited for tea at a grand venue. When she turned 70, she was invited to another event. This gathering made national news. Margaret says she was made to feel very special. She particularly enjoyed having a group photo with all the other participants in the study. At this gathering, Margaret remembers talking to the study team about what they were doing. She found it interesting how every participant was from a different social background.

Margaret is “very proud” of being a participant in the birth cohort study. She is keen to be in the project and thinks it is important to take part. She says well done to the research team for continuing with the project and thanks them for making her feel special. Margaret says to others who have been invited to participate in medical cohort studies to “go for it”.

Interview conducted in 2019.

Margaret recalls having tests at school and then, over the course of the study, filling in questionnaires and a nurse researcher visiting her at home to do physical tests.

Age at interview 73

Gender Female

I remember when I was at school, at primary school that, from time to time, I was given some kind of little test to do and also from time to time, one or two medical assessments.

And were they all at the school?

Not always at the school. The, obviously the written tests tended to be done at school and the medical ones, I think must have been a doctor who was involved in schools or something like that.

And do, did you have to travel somewhere to do those ones?

Just locally. I don’t remember many details about it.

They’ll send you a questionnaire and the questionnaire will be health and what’s the word I want, sort of social things. So, they’ll ask, Have you been in hospital recently, within the last year?’ Have you had any health problems?’ Obviously, Have you had any bereavements or illness of a close family relative?’ Have you moved house?’ that kind of thing. You can see what they’re looking for and you send it back and they’ll use that in their, whatever line that they’re interested in at the moment.

There’s kind a lot of tick boxes. There’s always the opportunity to write more if you want to.

And how long are the questionnaires?

Mm. Four pages, something like that.

So at the moment the involvement is just this questionnaire once a year?

Mm and from time to time, they will actually send a nurse researcher round. I don’t know how often they do that, and I don’t know if they do it with everyone and she will do blood pressure, height or weight, grip, some sort of balance thing, I think; that type of thing.

Great and was that always the case or has it changed that, the format of the involvement?

I think we had more of that in the last decade or two.

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Margaret receives a birthday card every year from the birth cohort study. When she was 60 and 70, she was invited to birthday celebrations with the other study participants.

Age at interview 73

Gender Female

They send us a birthday card every year and I can’t remember whether that started when we were children; I think it did.

When we were 60, they gave us a, offered us a tea at [venue]So had a very nice tea at [venue] and then when we were 70, there was another day in [city]. It actually reached national news; it was on television and it was on, in the newspapers these seventy-year olds and yes, we felt very special there. Big photo of us all.

Fantastic, so how many of you were there?

Originally, let’s get this right, thousands
Yeah.

nd they’ve kept, they’ve got a very good take up rate. they’re in touch with huge numbers, even though they’ve had to slim it down from time to time for research purposes.

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Margaret had memory tests for a birth cohort study where a nurse came to her house.

Age at interview 73

Gender Female

They’ll do memory tests with us now. So you get a booklet and they turn over the pages and there twenty words and then they get you to do something else and then they say can you write down all those twenty words [laughs] or the write down every, in a minute, write down every animal you can think of with the first letter B [laughs]. And of course under pressure of time, so.

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Margaret feels birth cohort studies like hers are needed to improve our understanding about medical and social issues.

Age at interview 73

Gender Female

And what’s your general understanding of why this study is needed?

I think for various reasons actually. it’s to advance medical research. it’s to advance social research. it’s important because it’s got such a widespread, and because it’s gone on for so long, they can see changes and they will. After all it’s coming in at the beginning of the National Health Service almost. And if you look at, because they’ve now written a book about it, there’s one or two things that we didn’t know before, like, for instance, they’ve got a list of things that mothers had before they had their babies and you think of the, all the luxury items now and what it was there and then the questions that the mothers were asked. Apparently, they were asked, If they had any pain relief during labour?’ Who looked after your husband after you had the baby?’ [Laughs] which is an interesting question and, you know, How soon they were back doing their normal life and so on?’

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