Barbara – Cohort studies

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 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 has advised the researchers of a birth cohort study she is in about a sub-project they are planning.

Age at interview 73

Gender Female

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.

Age at interview 73

Gender Female

Barbara says the questionnaires she completes are constructed well.

Age at interview 73

Gender Female

Barbara likes having the paper version of the questionnaire to fill in. She can reflect more on her answers and make changes more easily.

Age at interview 73

Gender Female

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.

Age at interview 73

Gender Female

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.

Age at interview 73

Gender Female

Barbara’s participation varies; sometimes she fills in a questionnaire and other times they ask her to have physical and cognitive ability tests.

Age at interview 73

Gender Female

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.

Age at interview 73

Gender Female

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.

Age at interview 73

Gender Female