You mentioned that your wife was also part of this study?

Yeah.

So, did you discuss your decision with her?

Yeah, it was obviously, it was a joint agreement. We both spoke and said, Are you happy, are you comfortable with answering the questions and she said, Yeah and also they spoke to my wife in Urdu as well and, you know, just want to reiterate that she was happy with it, so that was fine, you know, there was no, they reiterated everything and she was happy with that so, and then basically from there we just completed the information and that was it really.

So, one of the people who was inviting you to take part spoke Urdu?

Yeah, she spoke Urdu you see so and then I said to [partners name], in Urdu as well, Are you happy with that Obviously, [partners name] can speak English and she can understand English, but they still wanted to get her confirmation as well.

I was aware, you’d see leaflets, you’d see posters, you know, but I wasn’t aware, you know, too much about [it].

So basically, there was posters, fliers. You go to your surgery, you go to the maternity unit, there’d be staff members there. So, it’s just – I’d think what is this?’ The more it’s-, you also get leaflets through the post now as well. So people are getting educated on it, so that’s very important. I think if you, if they don’t get educated on what they’re actually doing then they’re not going to know about it, are they? So I think stuff that’s getting posted, fliers, leaflets, meeting people at like the maternity unit, the hospital, very important.

The reason being is so that they can obviously try to pinpoint and try to evaluate and conclude situations regarding conditions and illnesses that have occurred. Whether anything is linked to a particular diet or linked to a particular genes or – for example. So, it’s basically what they’re trying, it’s just so they have all that information and that information can then be fed through. Obviously, the more information you have, the more likely you are to get an accurate record of what’s been said, what’s been done. Does that information then link to anything towards a particular condition, is it because of this for example, is this particular condition linked because of this? But you won’t know that until you’ve got the information there. But that’s why it’s very important to collect the information because then you can take out something that’s not going to be linked with that. Oh well we’ve found out this, but it’s not in relation to this. So, we can remove that from that and just see if it’s linked to something else,’ you know what I mean? So, it’s very important.

I would just say that, just be confident and just be open, just be open and honest in how you feel; just express how you feel. If there’s something that you don’t feel comfortable about talking about, then you don’t have to, you’ve even mentioned to me. But if you don’t say something or ask the questions they’re not going to get the answers, so if you can provide information that can obviously get you to that destination where you get the answer then you, you’re going to feel good about yourself because you’ll think, Well I’m going to provide that information, that will help towards finding out an answer for something. I’ve done my bit, so and at the end of the day, you’re getting to meet other people, obviously pass your information on to them. they’re obviously trying their best to gather that information and obviously try and find a result, so you know, I’m all for it in a sense, yeah.

Yeah, I’d say obviously certain questions that they do ask are quite personal, you know, some people are a bit reluctant to answer those, you know?

What kind of questions would that be?

You know, for example, you know, like you were talking about people’s private lives and all that. Certain people, I’m not saying everybody, but some people are a bit reluctant to talk about their private life and everything like that, you see, so they might want it to be, you know, explained in a different way for example.

So that’s where, you know, I think [cohort study name] might have to look into and think, We may have to look at the way we’ve worded stuff or like the way this questionnaire is it could be that these questions could be a bit sensitive to the patien, for example, and they might not want to answer that – so we might have to look at the wording of that, the structure of tha and then obviously that might help, on a positive note improve the information. I don’t know what the results but I’m just thinking that it’s, some people are quite open, and they’ll just answer it, like myself. But some people are a bit reluctant because they think even though it’s all data protection and everything’s private and confidential – still they have that in the back of their mind, do I really want to answer that question?’ Do you know what I mean?

Yeah.

But then again, I’ve seen on the questionnaires, it says, if you don’t want to say, prefer not to say, you don’t have to say but then it says that if you, I think on one of the questionnaires, it was saying that if you don’t answer them then we might not get an accurate result.

Okay.

You know what I mean, so? It like contradicts itself in a sense, where you’re saying, Look, okay, don’t answer it, but then if you don’t answer it, if you prefer not to say, you’re not giving it here, like if you don’t answer it, yes or no for example then, you know, the results are not going to be- you know.

So, there’s like a little bit of pressure to

Pressure, yeah, yeah, yeah, I think yeah. So, I think that they could look into that and change that particular aspect.

So, can you think of an example of a question that you think may be uncomfortable answering?

I think, for example, like their religious belief. I think some people are a bit reluctant to talk about that, might have a bit of an aspect of, Why do I need to answer that question?’ you know what I mean? I’m quite open about that but I think, some people think if I answer that question, Oh look, is that going to differentiate me in any way’, and I think another question maybe, What’s your origin?’ I think sometimes they may be thinking, if I mention that they might think, oh, just targeting certain areas. So even though I’ve always answered it myself, I’m just saying that some people may feel a bit uncomfortable with that. Or even talking about whether or not the family members have had a certain condition, you know, or an illness.

But I think, Why are you asking that?’ is the thing. I think that’s the most important thing, I think if someone knows why they’re asking it then they’re going to be more comfortable giving an answer. But if you’re just saying, Oh look, we want to know if you’re this, this and this?’ and I’m thinking, Well that’s quite a delicate or sensitive matter, why do you want to know that?’ And they’re obviously having to think about, Well, why are they asking me these questions?’ I think, like you said, if they’re given information like prior, that this is what we need it for then I think the person will be more assured.

It was just saliva samples.

And how did you feel about that?

No, it was fine. Well, you know, basically I just wanted, first of all, you know, I wanted to know how would that work; basically, what equipment you’re going to use and everything like that and then they just explain to us, This is the equipment. You can take it with yo. They wanted to collect it after a certain number of days or something, so they said, Take it with you and then we’ll come and collect it from your house and we’ll take it away I asked the question how they were going to take it because obviously we would want to know how our saliva’s going to be taken, what type of equipment they’re going to use and so that’s what they explained to us basically.

They just may think, Why does that need to be in that particular questionnaire really, they’re asking me about a health condition or something like that, then why does this need to be requested in a sense, what’s that got to do with it?’ But it’s, I don’t know, whenever I’ve asked, whenever I’ve received questionnaires, they’ve always had this information, you see, and I think some people may feel a bit, uncomfortable having to provide something that’s not necessarily got anything to do with this, Why’s that?’

Yeah, I’d say obviously certain questions that they do ask are quite personal, you know, some people are a bit reluctant to answer those, you know.

What kind of questions would that be?

You know, for example, you know, like you were talking about people’s private lives and all that. Certain people, I’m not saying everybody, but some people are a bit reluctant to talk about their private life and everything like that, you see, so they might want it to be, you know, explained in a different way for example. What do you call it nowand then also I think with the information when it’s been given to you, I think some of the wording that’s been used on it, it’s quite, like certain questions, are quite, as I’ve said, it’s quite personal. I think also the wording on some of the questions could be a bit different. Not, I don’t mind how they’ve been worded but obviously there-, other people might just think, Oh look, well, this is quite,’ you know, that’s why they might not want to participate because it could be the way that it’s structured. The wording of the questions may not be for example, they feel comfortable answering.

Sometimes, I think what you’ve got is – if some people can’t speak the language then it’s very difficult for them to communicate. So I’m just saying for example, if they speak Urdu, Punjabi, Polish, Czech and other languages, it’s very difficult communication-wise. they’re trying to give an answer and they might – or receiving a question and they might not understand what’s been said. So, I think because I spoke English, I was able to respond to the questions, answer the questions. So, you’ve got to obviously have that understanding but I think what would work is that, for example if, if you’ve got the workers from [cohort study] who can obviously speak a language apart from English, like if they’ve got workers that can speak, you know, Urdu, Punjabi or Polish or Czech, you know, or any other type of language, it basically then gives the patient the confidence to say, Look here, I can open up, you kno. Whereas, if the English is, if they speak broken English, if English is not their strongest language, they’re going to struggle to give you a response so they might misinterpret it or something.

Yeah, that was the thing when they took my saliva sample, mine and my wife’s saliva sample, they said, Oh look, we’re going to take this for researc.

But it was just like you didn’t know when the results were going to come out and you didn’t get a timescale like that. It was just the results will come out and then you’ll get to know, that was about it really. I can’t remember what further was said but they said we’re going to use your results and your research towards this and then we’ll, they promote, not promote but they just send out not confirmation but it was like, this will be used but we don’t know when the results will be out or anything like that. I didn’t get, that was the vague part of it, was that I didn’t know what was going to happen afterwards and what the results would be and whether or not the results have created an accurate response of what has happened basically really.

I think, results-wise, I think that was the only thing I was a bit, because it’s been four years, I haven’t heard anything back about that so I thought it would have been nice to just say, Look from the results that you’ve provided and all that, we’ve just, this is what’s happene.

The result side I think that’s where there is a bit lacking, that you’re not getting the response regarding the results of what’s happened after or You participated in this, these are the results and this is what we found out. We just want to let you know that this is still ongoing or-. They also have that peace of mind that look, you know, they haven’t forgotten, as they say.

Oh well, it was an honour in a sense because, you think, you feel a bit responsible then don’t you? You think oh, look I’m making a difference; I’m, you know, providing information that could potentially have a positive effect on research and, you know maybe not in my lifetime but maybe in future years to come this research could help find information for other things, you see. So it’s very important in order to move forward, you’ve got to obviously, you have to do research and take knowledge from that and move forward and it’s been done in the past for example, so the only way to go forward is to do this, you see, so.

Soand just how things are now, compared to how they were before. We’ve got a lot of technology and research with different conditions that have cropped up especially with kids, who’ve got Asperger’s, autism and just trying to find out if there’s any links with these conditions. Wherever you can help, you know you want to obviously participate because at the end of the day it’s – we’re all one community and we find out where we can improve things. And see what’s out there and sometimes you’re looking for answers and you ask questions but you’re looking for answers and you don’t have the necessary answers at that particular time. So, it was all for a good cause and we duly participated.

For example, like autism, it wasn’t talked about much during my – growing up, but obviously as my children, two of my boys have got autism, it was just trying to find out how it happened, why it happened, just trying to get answers in a sense and thankfully I was able to get the answers by speaking to the relevant health professionals about it when my children got diagnosed. But it’s very difficult when you don’t have any information to go on, and without research you’re not going to get that. The more we do research on different things, different illness and disabilities, the more likely you are to get a result and find in the future maybe cures for different illnesses as well. So until you do the research you’re not going to get anywhere I’d say, so.

The reason being is so that they can obviously try to pinpoint and try to evaluate and conclude situations regarding conditions and illnesses that have occurred. Whether anything is linked to a particular diet or linked to a particular genes or – for example. So, it’s basically what they’re trying, it’s just so they have all that information and that information can then be fed through. Obviously, the more information you have, the more likely you are to get an accurate record of what’s been said, what’s been done. Does that information then link to anything towards a particular condition, is it because of this for example, is this particular condition linked because of this? But you won’t know that until you’ve got the information there. But that’s why it’s very important to collect the information because then you can take out something that’s not going to be linked with that. Oh well we’ve found out this, but it’s not in relation to this. So, we can remove that from that and just see if it’s linked to something else,’ you know what I mean? So, it’s very important.

I was aware, you’d see leaflets, you’d see posters, you know, but I wasn’t aware, you know, too much about [it].

So basically, there was posters, fliers. You go to your surgery, you go to the maternity unit, there’d be staff members there. So, it’s just – I’d think what is this?’ The more it’s-, you also get leaflets through the post now as well. So people are getting educated on it, so that’s very important. I think if you, if they don’t get educated on what they’re actually doing then they’re not going to know about it, are they? So I think stuff that’s getting posted, fliers, leaflets, meeting people at like the maternity unit, the hospital, very important.

You mentioned that your wife was also part of this study?

Yeah.

So, did you discuss your decision with her?

Yeah, it was obviously, it was a joint agreement. We both spoke and said, Are you happy, are you comfortable with answering the questions and she said, Yeah and also they spoke to my wife in Urdu as well and, you know, just want to reiterate that she was happy with it, so that was fine, you know, there was no, they reiterated everything and she was happy with that so, and then basically from there we just completed the information and that was it really.

So, one of the people who was inviting you to take part spoke Urdu?

Yeah, she spoke Urdu you see so and then I said to [partners name], in Urdu as well, Are you happy with that Obviously, [partners name] can speak English and she can understand English, but they still wanted to get her confirmation as well.