Eisha – Cohort studies

Eisha is part of a cohort study which followed her third pregnancy. She then became a representative on the project and, in a subproject, trained as a doula. Her involvement has made her more aware of the difficulties her community faces.

Eisha is part of a cohort study which follows the health of children from pregnancy through childhood and into adulthood. She was asked to join the cohort study by medical staff at the hospital while she was pregnant with her third child. She has given hair and blood samples as part of her participation, and has been asked about her mental health.

As well as being a participant, Eisha became a representative and now works with the study team. She was also trained as a doula in a subproject, and this role includes helping pregnant people before, during, and after birth.

The first time Eisha went to an appointment for the cohort study, she felt like she learnt a lot. She says it built her confidence as she was learning about her local community. She thinks that, if she had not taken part in the cohort study, she would not have known about what was going on in her home city. Eisha thinks that the researchers chose to research the area because it is generally quite deprived. While she describes it as a beautiful part of England, she thinks that living there can make you feel depressed and worthless. These feelings motivated her participation as she wanted to change how women and their children in particular might feel about their home city.

When Eisha first started in her role as a representative for the study, she remembers having a group meeting with eight to ten people. She was asked questions about her community and how she felt about participating in the research. She also remembers being asked about the difficulties that people in the city have. Eisha feels amazing and positive about being involved as she can see changes that have come from the study. While Eisha feels a sense of responsibility because she is representing her community in the cohort study, she feels that it’s worth i. She has no concerns about data protection as the researchers have made her feel safe and secure.

While Eisha is mostly positive about taking part in medical cohort studies, she believes that some people may not have the time to take part. She thinks that people feel a sense of responsibility when taking part in cohort studies which may cause them to get overwhelmed. When she was trained as a doula by the study team, for example, she felt overwhelmed about how to best support people who go over their due date.

Eisha’s messages to others who are invited to take part in cohort studies is to do it as it could change your lif. She says she has grown as a mother and woman by participating in the cohort study. Eisha’s message to researchers is that they should highlight the outcomes of studies more. This is important to Eisha as she has spoken to people in her community who have never heard about the cohort study or its outcomes.

Interview conducted in 2019.

As a mum, Eisha feels passionately about research that can benefit future generations. She is involved in a cohort study as a participant and a patient representative.

Age at interview 32

Gender Female

Yeah, I just want to say this is, this is a fantastic thing, you know. I mean, people like me who, I’m a mum and I think that is the best title I love to wear; a mother because I’m bringing up my kids which will be the future generation, right? And I would-, would love to have, I would love them to have a safe and secure and developed place to live. I don’t want them to feel that we are living in a, you know, deprived’ is a very sad word. Deprived is a very harsh word to say, I think. Why we are deprived?’ because we live in England, you know and, and people say deprived area. It hurts me when people say, You’re from [city], it’s a deprived are. You’re from [city], it’s a backward are. It is not. I want everybody to know that it is a beautiful place to live. People and community around me is amazing and there’s some fantastic research going on.

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Eisha believes her cohort study is doing [an] amazing job at bringing change to her local community.

Age at interview 32

Gender Female

Yeah, I just want to say this is, this is a fantastic thing, you know. I mean, people like me who, I’m a mum and I think that is the best title I love to wear; a mother because I’m bringing up my kids which will be the future generation, right? And I would love to have, I would love them to have a safe and secure and developed place to live. I don’t want them to feel that we are living in a, you know, deprived’ is a very sad word. Deprived is a very harsh word to say, I think. Why we are deprived?’ because we live in England, you know and, and people say deprived area. It hurts me when people say, You’re from [city], it’s a deprived are. You’re from [city], it’s a backward are. It is not. I want everybody to know that it is a beautiful place to live. People and community around me is amazing and there’s some fantastic research going on. [study name] is doing amazing job and it is bringing change in lots of people’s life. As I mentioned, if you would have met me three or four years ago, I was completely different person and I grow as a person because I was participating into something which I felt is needed. So, all I want to say is what [study name] is doing is we need that. it’s a need of the time that we should bring the change for the kids for the future, for the future of [city].

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Eisha filled in questionnaires about her diet and emotional wellbeing for a parent and baby cohort study she took part in.

Age at interview 32

Gender Female

Yeah, they talked about how do you, they talked about healthy eating, so there was a lot of questions regarding, What do you eat?’ How many meals?’ How many fruit intake is in your diet?’ and then there were question regarding, How do you feel?’ How your moods?’ Are-, are you teary? Are you happy? So vaguely, I don’t remember clearly but I think those were the questions, yeah.

So, they were looking for if a mum is healthy, how does that impact on a baby for baby mental health and growth. If a mum is mentally, having any mental health issues, how will that impact on the weight, on the size of the baby. The food intake as well was in the questionnaires, so what I’m eating and taking in as a diet is affecting my child.

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Eisha says taking part in research is a time commitment and it can become overwhelming if you are juggling lots of activities in your life.

Age at interview 32

Gender Female

I think it’s just the commitment. You need to give your time, like, you know, I’ve got family, I’ve got kids, I’ve got little ones, I work, I volunteer. Even in my work I volunteer. I do provide massages to elderly people whenever I can. it’s just that you need to commit for the time and sometimes I believe people who are participating into some sort of a research, because it’s a sense of responsibility and it is a commitment, it sometimes it gets overwhelmed if you’re everywhere and if you are, if you’re giving more than sometimes it’s more than what is being required. That is it.

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