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.

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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.

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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.

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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.

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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