Rafi and Iram

Brief Outline:

Rafi and Iram are part of a cohort study. They were motivated to join the study to help Iram’s mental health. Rafi believes that Iram’s mental wellbeing has improved since joining the study.

Background:

Rafi and Iram are long-term partners who were interviewed together for this study. Their ethnic backgrounds are British Pakistani.

More about me...

Rafi and Iram are part of two cohort studies which they joined when they had their first child three years ago. They are unsure which parts of their participation are for each cohort study, as the two have blurred together over time. Rafi and Iram were asked to join the studies through a friend of Rafi’s. Their initial participation involved Iram donating some hair and providing her weight and height. They also filled out a questionnaire. Iram said that, at the time, she was very happy to provide the samples. They have participated at different times and different locations. They have not received any feedback from the studies but would like to have summaries of what the research teams have found.

Rafi and Iram were motivated to join the studies because they thought they might see some changes in the community for their next child. They have not seen any differences come out of the research yet but are choosing to continue participating. Iram says that she has had help from a research team member with her children. The team member visits Iram once a week and she takes her height and weight. They also talk about Iram’s wellbeing and her child’s health.

Rafi thinks that Iram was chosen to take part in the study because she lives with a couple of mental health conditions. They thought that by joining the study they might get some help with Iram’s mental wellbeing. Since participating, Rafi thinks that he has seen a difference in Iram’s mental health. This is because, before joining the study, Iram would spend much of her time at home and the research has provided her the opportunity to go outside more often.

Rafi thinks that taking part in cohort studies is “good for everybody” because researchers can find out why certain groups of people are living with certain illnesses. Iram is motivated to continue her participation to find out about her own body and her illnesses. As Iram’s first language is Pashto, she sometimes struggles to understand the consent and information forms that she is given. However, Rafi is usually around to translate, but she would prefer if the forms were translated for her. Rafi would like more information about what the cohort studies are doing and why they are doing it.

Interview conducted in 2019.

Rafi remembered signing forms and consenting to data sharing, but he doesn’t have copies of the paperwork.

There was a consent form I think that we filled that in and we gave them consent that you can use this information for research and, you know, for these purposes, so they can share the limited information, you know, to third parties which is related to the healthcare.

No, they didn’t even give us them, the copies.

You know, what are we going to do with the information? But it obviously when it’s come back after a few years then you’re thinking, ‘Oh I should have the copy,’ but, you know.

Rafi and Iram suggest that as well as collecting information from participants they need to provide the study answers.

Rafi: She said, like the sample they took, so that was good but it’s-, they have to come back as well, so this is something that may make it better and this is other things as well. You know, if they’re doing something, so they have to come back with the answer or solution as well.

Iram: How again? Like how they came, for example when they’d taken it [the sample], we didn’t get a response back. This means they should do everything properly in doing so. If they ask a question, then the answer would be right”.

So that was just…

Rafi: Not just asking; there should be answers as well then for that.