Salma
Salma’s participation in a parent-child cohort study came about around 2008. At the time, she was expecting her first child and was waiting in the hospital for a test. Her main reason for taking part in research was her interest in what causes certain diseases and how they can be prevented. In 2011, she decided to become more involved in the health research and became a parent governor.
Salma is married and has three children. She lives in an extended family group. She works as a secretary and, for the last seven years, she has been a parent governor for a mother-child cohort study. She is a college graduate. Her ethnic background is British Asian.
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Salma’s participation in a parent-child cohort study came about around 2008 when she was approached by a member of the research team in a hospital. At the time, she was expecting her first child and was waiting to have a test. Her main reasons for taking part in the research was her interest in what causes certain diseases and how they can be prevented. She feels that her participation, alongside other members of her community, will contribute to medical science that, in turn, will help her family and community.
Salma feels that sometimes participation in long-term health research can be time-consuming. She remembered that, when she was recruited, she had to complete a lengthy questionnaire that lasted about an hour and a half. It included questions about her health but also about lifestyle, such as diet and physical activity, as well as income and housing conditions. After her children were born and over the years, a member of the research team has come to her house to take blood samples, weight and other measurements to assess their physical activity and so forth. She does not mind the time and work involved in taking part because she feels it is all towards the benefit of her family as well as her community. The parent-child health research study keeps in touch with participants on a regular basis by sending birthday cards, leaflets, newsletters and by organising meetings and an annual festival open to the families involved as well as the community in general. Salma also follows their work online as their website provides further information and updates.
Salma says that mental health conditions are not always well understood in some communities and explains that participation in the study has contributed to a better awareness of her physical and emotional wellbeing. She was diagnosed with postnatal depression following the birth of her third child and was able to recognise what was happening to her, including her low mood. She says “it made me happy that, you know, this group is doing something that is helping me directly because I’m going through something and these guys have done research on it and, you know, it’s beneficial to me”. Salma sought help from her health visitor who, together with her husband, supported her through this period. She had counselling and recovered without the need of medication. One piece of advice that she still follows is daily walks in green spaces - something that at weekends and holidays includes the whole family: “we go out in all-weathers”.
Salma feels that her children have also benefited through their participation in health research by becoming aware of healthy eating and able to make healthy choices. She explained: “My kids, they’re very much aware of what’s good for them and what’s not good for them. We mainly eat fresh ingredients, meals prepared at home and once or twice a month we go out to eat”.
In 2011, Salma decided to become a parent governor and to contribute to health research as a member of her community and because she has a scientific background. As a parent governor, she feels well informed and consulted by the research team and says that her understanding of long-term health research has much increased. She described the people leading the health research as “caring people”, interested in improving the health and wellbeing of other human beings.
Interview conducted in 2019.
Salma enrolled herself and her unborn child into a cohort study after she was approached by a member of the research team whilst waiting in hospital for a test.
Salma enrolled herself and her unborn child into a cohort study after she was approached by a member of the research team whilst waiting in hospital for a test.
When I was expecting with my first, when I had the glucose intolerance test it’s a long window that you have to wait for. First they check your sugar levels then you wait, they have, you have a drink and then you wait for two hours or so. So I was approached at that time when I was waiting and it was something that caught my eye. It was interesting, that’s good it’s not gonna just help me but it will help the wider community and others, so I said I’m interested and since then I was recruited as a parent in 2008/9.
Salma was given a leaflet and spoke with a research nurse about a study. She felt comfortable asking questions and the researchers are “a very friendly team”.
Salma was given a leaflet and spoke with a research nurse about a study. She felt comfortable asking questions and the researchers are “a very friendly team”.
Yes. Yes, they explained it to you and basically this is what we’re trying to do, they verbally explain it and then they give you the form so you can read the forms, if you have questions you can ask them.
Okay.
And then once you’re satisfied then like filling this form out I asked, you know, this is what I need to do, why they’re asking these questions so if I have concern about something I’ll ask them and they’re, you know, willing to answer it as opposed to saying, you know, why are you questioning this.
Okay.
They’re a very friendly team.
They explain to you what they, what their goal is, what they’re trying to achieve. So if you’re alright with it, you know, you can sign up if you’re not alright with it you can have the right to say I refuse to participate in this study, so it’s your choice nothing is done by force or without your consent.
Salma suggests study teams should stay connected to average people as they can have a big input to your studies.
Salma suggests study teams should stay connected to average people as they can have a big input to your studies.
My message would be that stay connected to average people, you know, you, you can learn a lot from them or they can have a, a big input on your studies. And especially, you know, living healthy and like the problem I just told you about seem small but, you know, about litter in the street but if you look at it, it has an impact on our children. So if you stay connected with average people, find out about, you know, different issues or problems that they’re facing, it can direct you towards your research or find a solution to various problems that communities are facing that has an impact on their health and emotional wellbeing.
Salma recommends using simple wording so that people who speak English as a second language can understand.
Salma recommends using simple wording so that people who speak English as a second language can understand.
But as a parent governor you’re presented with various like, for example, like memos or like maybe leaflets that they’ll wanna send to other parents and they ask us to go over it. “Is the language understandable?” you know, “Is it friendly, average people can read it?” or, “What do you think of the questions? Are they too invasive? Would people be pushed off by it?” So we usually as parent governors give them feedback about, you know, yes the terminology is too medical depending on who like, I remember one of the PhD students she wrote for her PhD she wrote like a like I think it’s a healthy, healthy living or life, changes for life or something like one of those.
Yeah, the questionnaire that she did was too medical so we said to her like average people won’t, you know, people that speak English as a second language they won’t understand the terminology so simplify it a bit or for this word instead of using this word this is another word that you can use.
Asking it in simple terms.
Exactly
It’s in simple terms because different people are different levels in their education and understanding.
Exactly.
So keeping it simple you’ll get most people understanding what you’re trying to say.