Steve - Interview 03

Age at interview: 49

Brief Outline: Steve aged 49 years is married, White British and a full time carer for his wife and son who both have Osteogenesis Imperfecta. Steve has taken part in a Cohort study since the birth of his son who has recently took part in the second stage of the study.

Background: Steve took part in Cohort Asthma Study after the birth of his son. Study continues and his son has now taken part in the second stage of the study to look at allergies.

More about me...

 Soon after his son Jhon was born, Steve and his wife received a letter from the hospital asking if they would take part in a lung and asthma study that involved filling out an annual survey questionnaire asking about his son’s coughs and colds and general health. They agreed and continue to complete these annual questionnaires' his son is now 12 years of age. In 2009 they received notification through his son’s school that they study was now entering into the second stage to look at allergies.

 

Steve talks about the little information received about the study overall and is unsure why he was chosen to take part' “I don’t know if it was because I was a smoker or Jhon was born with Osteogenesis. I’d like to think they were all contributing factors towards the case study. But no, nobody sat down, we haven’t met anybody from the study people, it’s all been done by letter”.

 

However, Steve is very supportive of clinical trials and any research that is going to help others and importantly help the medicine to progress and inform those working in the field of medicine. As such Steve has never considered withdrawing from the study.

 

Steve has always encouraged his son to take part in studies, however, he also allows Jhon to make his own decisions on such matters' this is very important to Steve. However, he does feel that better or more communication about the study would have been nice so that they felt kept in the loop.

Giving the researchers all the information about his son's condition might provide a new avenue...

 But I would be encouraging other parents, other children to go for it and to give them as much information as I could for them to give the people asking the questions as much information whether they think it’s daft or not let the people asking the questions decide if it’s daft or not. Because at the end of the day, they’re going to be choosing what part of the interview is relevant, what answer is relevant, but by answering all the questions and enough people answer the questions, it could open another line, road for them to go down. Because previously they’ve thought either they are contradicting themselves or it shouldn’t be happening like that but if enough people are saying well maybe it isn’t a contradiction, maybe this is something that we’ve dismissed but now we need to look at because too many people are saying, I’m getting this as well.

Steve says it is his son's choice to take part, or not, in a trial, although he hopes that his...

 I would like to think that any trials that involved possibly days, mornings, afternoons, even overnight at a hospital that by the time we’re at that stage they’re freely giving you the information, and we know roughly that yes, things can go wrong, things don’t always go according to plan. But we, I would like to think that isn’t the norm. Yes, we all know that things can go wrong and it is just bad luck. They’ve not gone out of their way to make you stay in hospital even longer because it’s not what they’ve wanted you there for. So yes, I would like to think that providing they came to me with all the information that I think is relevant they could answer all my questions, then I would be saying to Jhon, “I think go for it” and that he would. I would like to think he’d say yes, but I can’t make him. I don’t have that right, even though I’m his Dad. And, he’s a minor. I think he’s old enough, maybe too wise, but at the end of the day the choice is his. And I’d like him; I’d like to think that he knows that I wouldn’t put him forward for anything that was going to cause him unnecessary discomfort.

Steve was approached just after his son was born to take part in a research study, although they...

 Just after he was born we received a letter from the hospital asking would we take part and it would just consist of filling out a survey questionnaire asking how his colds and coughs would be, if there was any other side effects from it and I said “Not a problem”. Anything to help. Last year at some stage we received notification through the school that it was going on to the next stage and it would be to see what allergies and if be multiple methods of seeing if there’s a reaction and the G.P.’s would be informed presumably if anything came up. 

 

Just that they were, they didn’t say how long it would be going on for, just that they were trying to get as much information as possible to see on people’s lifestyles. At the time I was a smoker and Sharon had never smoked but I was and they just wanted to see what could be done, if anything could be done to help them prevent or get a cure for colds and coughs in babies and young children.

 

Right and do you know why you were approached?

 

I don’t know if it was because I was a smoker and or Jhon was born with Osteogenesis. I’d like to think they were all contributing factors towards the case study. But no, nobody sat down, we haven’t met anybody from the study people, it’s all been done by letter form.

 

It’s always just been a letter. That’s interesting. And how often, did they say how often or how often do you have to take part or what’s involved?

 

Every couple of years they’ve sent a letter out with a questionnaire and from what I recall it’s no different than the first one we filled out.  He was ten, eleven, roughly that age that it was filled out the last time. And, there was a pre-paid envelope to send it back in.

 

The questionnaire seems to be the same each year. The questions are about our son's health.

 I believe there’s always a comments section of which you can ask any questions that that you want, you know but it was only every two to three years that you filled the form out . So, when it comes through your door you think “Oh, it’s that time again” because you’ve forgotten that you’ve done it. But once you start ticking the boxes or writing any answers down you realise that its, for all you know they’ve just photocopied the form and crossed out your answers to see if you are putting the same answers in. There didn’t seem to be any difference in the questions and apart from the time that, when I gave up smoking I would say our answers have been the same all the way along.

 

Well, how often was he having a cough and a cold? Did he suffer for, what was the period of time like that he was suffering with this cough and cold, had we done anything different for maybe this cough and cold to come along? How, how long had he been off school. 

 

They have never thought about withdrawing because the information they give might be of benefit...

 I mean have you ever thought of withdrawing from it at all?

The reason that never thought about withdrawing because I believe that whatever information we send in might be of benefit. It might be no use at all but without them having it, they’re the supposed experts, they’re the ones that have to decipher all the information and in my mind they know which bits are important where we don’t. But without us sending that information in, where do they go? Because if we all stopped sending it in then whatever information they have got is useless. And with everything changing on a daily basis, yet alone yearly, I considered stuff like that very important. It doesn’t cost me anything, maybe five minutes of my time that I can fill the paperwork out. So, in sod’s law says it’s going to be me who suffer because I’ve not filled the paperwork out than somebody else. [Right.] You know whether my information is relevant or not, it’s me who’s going to suffer because of the information they’ve not received. I see it that when you go to the hospital for whatever reason, when they’re asking for a history, if you don’t give them all the information they can’t treat you properly. And something that you don’t tell them could hurt you. It’s not going to hurt them. If they’ve not got it and if you’ve got no outwardly signs of a condition or anything then they can’t ask you a relevant question that could give them maybe he’s got this, so any information that I withhold I’m putting my life at risk, not theirs. And I enjoy living.

 

Because they haven't had any communication or feedback from the researchers, except for the...

 Only in the aspect of even at the start of these new studies sending the letter out every two to three years asking for you to fill out the same form again, that’s okay but maybe they should be sending a letter out sort of keeping you updated so that you’re not forgotten. Because as it was, we were getting these, this form every two to three years, you’d forgotten about it because apart from the five minutes it took to fill out and sign the form there is nothing, no information being brought forward, nothing to tell you when you receive the form of how things are progressing. So, and never actually having met anybody that I can recall. Because the amounts of different doctors and nurses that we’ve seen, some of them we’re on first names terms with because of how often we’re there for. So the person that asked us to take part. I don’t, I can’t recall them. You know there could have been one of the nurses or doctors that came in on ward rounds, for all I know they could have just sent us a letter because we, Jhon was born on a week that they’ve chosen and they’ve sort of okay we’ll send a letter out to everybody who has had a child this week. So we might not actually have met anybody. You know we could have just been fortunate that we were on in the hospital that week having a baby. So... remember the people that you’ve got on these trials, keep in touch, not saying go out for a cup of tea or a pint with them every week because the amount of people on you haven’t got time for your trials that way. But maybe every six months a letter, every twelve months a letter, just to keep you in the loop.

 

Oh, over like I said, it’s either four or five forms from what I recall it’s the same form. I’ve filled out four or five on Jhon’s lungs on how a cold and that has affected him over ten years. I would have thought by now there’d have been some information that they could have given us, maybe the forms change slightly. Because I don’t know what the date on these forms are because it’s not anything that’s occurred.