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Flu or Flu-like illness in chronically ill or disabled children

Finding Information and Support

Parents used various sources of information and support. The Internet was a popular way to search for information about influenza and flu-like illness and also to communicate with other parents about how they manage flu-like illness. As Anita said, “Somebody has been there, done it before haven’t they?” Some parents told us they talked to parents on Internet chat forums, such as Netmums and Baby Centre.
 

Emma uses the Internet to find information and says she’s learnt more from other parent’s experiences than talking to health professionals.

Emma uses the Internet to find information and says she’s learnt more from other parent’s experiences than talking to health professionals.

Age at interview: 25
Sex: Female
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And in terms of information you mentioned that sort of the consultant that you see, that they haven’t given you specific information about how to deal with the flu or flu-like illness.

Yeah. 

No?

No there is nothing specific that I can remember anyway them saying when your child has the flu you should do this, you should do that, etc. etc. but I do tend to get a lot of information just online myself. Obviously with two children with a lot of health conditions I do quite a lot of research myself. So when things like the flu or any illnesses do occur I’m straight on the internet and finding out as much as I can about it, learning how to manage, at what point should I be calling the doctor, things like that. So 

Do you remember the sites you visit or?

Quite a few really. I, I finish [blah, blah, blah] visit NHS Direct quite a lot cos there’s some really useful information on there. But then I also go onto forums where other people, NetMums and things like that. There are Facebook pages that are quite relevant to the children’s conditions specifically so Families of Ocean Ward which is a ward that he stayed on when he had his heart surgery. There’s a lot of information. There’s a lot of people commenting there saying, has this ever happened to your child and then loads of people send their experiences in. There’s a page for my daughter Jaimie’s who’s got partial absent corpus calosum in the brain. There’s a page on there where different parents chat about experiences and has your child ever done this or suffered with this or what do I do in this scenario? Is this related to her illness et cetera? Yeah even, even his cleft lip there’s a page just for, for cleft lip parents. And I’ve learnt quite a lot of information just from other people’s experiences as well.

How useful has it been to you, how helpful has it been gathering all this information?

Really useful, more, more useful than the doctors and professionals really because I find doc, a lot of doctors and professionals tend to have a sort of one, one thing fits all kind of mentality whereas gaining other people’s experiences in different. You know I’d rather speak to somebody or a hundred people who have been through the same thing and get all of their experiences than a doctor who’s read it in a book and maybe not come across that specific scenario before. 
Others found specific health condition Facebook forums or charity websites useful for reassurance or advice. Naomi’s local support group for children with Type 1 diabetes held coffee mornings which she said was an invaluable source of support. For Maria, NHS run diabetes parent meetings had been very helpful to hear how other parents of diabetic children had managed episodes of illness.
 

Sarah uses several information sources. She has found that talking to other parents on the Down’s Syndrome Facebook group has been really helpful, while recognising that Arthur may be different.

Sarah uses several information sources. She has found that talking to other parents on the Down’s Syndrome Facebook group has been really helpful, while recognising that Arthur may be different.

Age at interview: 37
Sex: Female
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And where has your information come from, regarding sort of his condition and the way in which he could be affected by the flu-like symptoms?

Pretty much through just talking to other parents, really. I mean, we had a lot of it - when he was first diagnosed, we were given a lot of information from the hospital. They have a clinical nurse who specialises with the disability children, and she runs an amazing clinic every month for Down's, or a meeting for families with Down's syndrome. Google, good old Google [laughs]. If we're not sure, it's a bit of a Google. I try and keep to like the NHS sites, rather than Wikipedia and things, because I understand anyone can put anything on Wikipedia. So try- or even Down's Syndrome Association, they're really good. Their site. We became members pretty quickly with that, and you can call them. They have a line and you can ask questions, and go onto the website and things. But I think a lot of our kind of - if I'm not sure, there's a, like there's a group on - even a Facebook group for DS, for Down's syndrome parents. Just a post a question on there, and you pretty much get other people's experiences. But I think every parent still has to remember that every child is different. And although that worked for your child, although that's what, what was wrong with your child, doesn't necessarily mean that these symptoms are equalling that for Arthur.

Okay.

But it's a lot of communicating I guess, to other parents as well.
Parents we talked to who used the Internet to find information stressed that it was important to use reliable and trustworthy websites and to double check information. NHS websites and specific health condition websites, such as Asthma UK, were considered to be useful sources of information and support. Some parents also used general search engines, such as google. Michelle thought information on the Internet could be misleading because some parents are talking about their experiences of their child having a bad cold rather than influenza or flu-like illness.
 

Clare thinks it’s very valuable to hear other parent’s experiences on forums but it’s important to remember their experiences are anecdotal and may not be based on research evidence.

Clare thinks it’s very valuable to hear other parent’s experiences on forums but it’s important to remember their experiences are anecdotal and may not be based on research evidence.

Age at interview: 44
Sex: Female
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Has any, well I know you are a health professional yourself so have you looked for information about flu or a flu-like illness somewhere?

Yeah, yeah. I mean there is plenty of information out there I mean like all the NHS news traces and all that type of stuff, yeah. And obviously even in the GPs surgery you have like the screen and they will, you know, put up like health promotion literature up there and give out stuff yeah. 

But have you visited any forums or websites that provide more information?

Just sort of parents boards, I mean they are anecdotal stuff aren’t they but yeah I do like to look at those sometimes, yeah [laugh].

Ok. 

I think that’s the way it’s going though. People do get a lot of information off the internet and obviously the difficulty is it’s completely unregulated a lot of it isn’t it. So it’s making sure you look in the right places really isn’t it and…

Ok like the right places like?

You’re not…

Like official websites?

Yeah and parenting boards are fine as long as you recognise that they are people’s opinions and that, you know, they’re not necessarily medical backgrounds and stuff but that doesn’t mean it isn’t, it isn’t right, you know, because it works for one person. You might think yeah that’s a really good idea. I might try that but it’s just remembering that any advice that people are giving is just their own experience really isn’t it, you know? But I think they are very valuable actually.
 

Sharon only uses trusted websites. She finds charity websites, NHS Direct and BUPA websites helpful for information about her son’s symptoms.

Sharon only uses trusted websites. She finds charity websites, NHS Direct and BUPA websites helpful for information about her son’s symptoms.

Age at interview: 44
Sex: Female
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I mean the internet is a good tool but you have to be careful on what sites you're looking at because I'd only go to sort of trusted websites – NHS Direct, that type of one, particularly for symptoms, I find that one very, very useful.

Yeah

And the BUPA website again, I find is a sort of symptom tool checker – they're very handy.

And reliable. And talking to people as well. I think, you know mums that talk quite a bit and your children will catch all these sort of illnesses particularly in the school playground – you tend to catch the same sort of similar thing so it's talking to people as well and you can gather advice and help from each other.

What about forums, web forums, do you…?

I'm not a big fan of that really because I've not really… I've not really become on those no. I know people that are on sort of Netsmum, Mumsnet and forums there but I personally haven’t, no, done that.

What about Asthma UK, have you been in contact with them at any point or any other asthma charities?

Yes I have. Asthma UK and the Eczema Society.

I do look on their websites and read sort of their articles. I'm a member of the Coeliac Society and Diabetes UK. And I probably couldn’t do without their support on both charities.
Double checking information had helped Harriet. She had read in a magazine that an antibiotic her son, who has leukaemia, was taking had been banned for other children. This caused her a lot of worry. But when she double checked with her son’s consultant, she was told the antibiotic was not banned. Karen says she talks to her GP about information she has found on the Internet and her GP is happy for her to do this.
 

Nia’s GP was able to give her clinical trial data when she was making decisions about the swine flu vaccine. She has training as a scientist and also reads scientific research papers.

Nia’s GP was able to give her clinical trial data when she was making decisions about the swine flu vaccine. She has training as a scientist and also reads scientific research papers.

Age at interview: 27
Sex: Female
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If for example when I was looking at the swine flu jab back in 2008, I looked at scientific papers, I looked at the trials data that was brought out by whoever, you know the pharmaceutical companies, and that kind of, and weighed up the pros and cons. But a lot of parents wouldn’t be able to necessarily understand that information. My background as a scientist helps me to do that. A lot of parents wouldn’t understand the scientific papers, they wouldn’t understand the outcomes of the clinical trials. So it is not necessarily an approach that other parents might be able to take.

You know being able to comprehend why a particular, why is this, has this swine flu jab been approved, well it’s been approved because the data shows that it’s effective.

Yeah.

But you when you read, you know yourself when you read trials data you read scientific journal articles it’s nothing’s every 100%, you can never say this is, you know this cures this, this makes this better. There’s always somebody is made better, somebody isn’t, somebody gets worse but the general you know trend is that this drug is beneficial.

Yes.

But it’s never 100%.

Yeah.

It’s never, with vaccinations it’s, it isn’t with any kind of drug, so you’re always making a cost versus benefit kind of assessment but I base that very much on the evidence that I can gain.

Yes, yeah. Yeah. So you go to the papers and…

I go to the papers, I go to the data,

…you go several steps back to look at…?

Or if I can’t get hold of it myself I’ll ask my GP can you get hold of, particularly for the swine flu data I asked my GP could he get hold of clinical trials data which he could, and he did and he provided that for me.

Okay.

And I went away and read through it and then I was satisfied that the Pandemrix jab was suitable.
Specific health condition charities had been useful for reassurance and advice. Ruth and Nia had spoken to Asthma UK nurses. Nia says, “They’re really, really helpful and they put your mind at rest or tell you what they think you should be doing.” Michelle found WellChild a good source of support. She says, “There’s always someone friendly if you need a bit of advice.”
 

Talking to an Asthma UK nurse helped Ruth when she was worried about her daughter’s symptoms.

Talking to an Asthma UK nurse helped Ruth when she was worried about her daughter’s symptoms.

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And the couple of times I’ve rang the Asthma UK nurses, and they are brilliant like you know. A couple of times where it’s just at that point where you kind of think, “I’m fine, I’m fine. Everything’s fine. And then suddenly you just don’t feel fine anymore and you’ve got questions and you can’t get an appointment quick enough and you don’t know, you know and they’ve been really good and really helpful. It’s nice to just talk to somebody who’s just, it’s happened twice I think.
Some parents had received information about influenza or flu-like illness from health professionals early on in their child’s illness. The doctor had explained to Waj that because her daughter has cerebral palsy and her immune system is weak, she could be more susceptible to colds and flu-like illness. The asthma nurse told Lyndey, “Just be alert because it can come on very quickly.” She said it was, “the best piece of advice I was ever given.” When she was a baby, Louise, whose son has diabetes, had been told to follow the ‘Sick Day Rules’.
 

When her daughter’s breathing becomes laboured Ruth refers to her daughter’s personal asthma action plan, which was written by her GP and asthma nurse.

When her daughter’s breathing becomes laboured Ruth refers to her daughter’s personal asthma action plan, which was written by her GP and asthma nurse.

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What I should really have said actually is one of the things that really helps us with this little routine is the personal Asthma Action Plan.

Okay

…that Asthma UK, I should have said that earlier.

Yeah.

Because that gives us, when you’re, when you’re panicking a little bit, even when you know what you’re doing, you know, when you’re panicking a little bit and you’re just like, “Oh God she’s getting bad,” [Ooh] and you’re kind of, you know, having that kind of conversation between yourselves about what to do next. We’ll often get that out ‘cos it’s got the zones of you know, and it’s…

How is that, could you just explain what it is?

So it has, so the Asthma Action Plan is specific to your child, that you agree with the GP or Asthma nurse. And basically for the symptoms that your child has you kind of work out a sort of green, you know a zone 1 – no asthma symptoms, everything is fine. Zone 2 – things are worsening, blue inhaler is being used more often. You’ve upped the brown inhaler, it ups you know that kind of and you know then you’re up to sort of three – Asthma emergency, you know you’re giving prednisolone, monitoring whether that’s working, and at that point if she’s not then you, you’re going to hospital. 

And although you know we know it like the back of our hands, we often get that out because it’s something tangible to kind of go, “Right, she’s doing that but not that and we should do…” you know, so it’s, it’s quite useful to have a sort of plan to really look at. In a sort of…

Yeah

…specific sort of way.
 

Alex’s doctor said to look out for early symptoms of flu-like illness as it could affect his asthma.

Alex’s doctor said to look out for early symptoms of flu-like illness as it could affect his asthma.

Age at interview: 50
Sex: Female
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Initially when you child was diagnosed with asthma when he was initially diagnosed with asthma and, [interrupt] with asthma and all his other allergies were you aware or were you made aware of the other concerns regarding sort of flu-like illness and its impact on his underlying conditions?

I think yeah it was, it was quite specific though. It was one of the [hospital] doctors that specifically had the discussion. And he was the one who initially said, “Oh you, I highly recommend you to sort out a flu jab for him cos up until that point no one else had mentioned it. So…

Ok. And did they, anybody sort of, any doctor or nurse tell you about what you should like or you should look out for early signs and symptoms of a flu?

Yeah that particular, that one particular doctor again he did say. Because he was explaining at that point the symptoms of the asthma when he thought we should seek medical help. And also as you say to look out for the early signs of, of flu-like symptoms because he was more likely to, obviously go on to get the asthma symptoms if he had the flu-like illness first.
Other parents said they were drip fed information from health professionals and they would have liked more information from the start of their child’s illness. Having good information about what to expect when their child became ill and how best to manage helped parents to feel more confident and secure. Fiona says, “It empowers me to have the information.”
 

Lyndey wasn’t told clearly enough to look for signs of influenza or flu-like illness in her asthmatic children. Later the information from the asthma nurse was very helpful.

Lyndey wasn’t told clearly enough to look for signs of influenza or flu-like illness in her asthmatic children. Later the information from the asthma nurse was very helpful.

Age at interview: 35
Sex: Female
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So coming on to sort of information and what you have been told, so just firstly, I just want, you know, when they were diagnosed, early days, were you ever told that to look out for viruses, look out for these things that they might be of a concern for your children?

Not properly. No, that was something I had to figure out for myself. I think probably I was told but not clearly enough. So when you’re very uneducated about something, people think that one telling is enough but they actually need to spell it out very clearly. That’s been the case for me in all sorts of situations in life. It doesn’t go in very well into your mind to start with and, after a few months of it, you can sort of think, well, yeah, I should be managing this more preventatively, if I can. And they probably did tell me that but it never went in.

Yeah.

I’m sure they did but it might have been the GP that said it in a vague way and the asthma nurse has got a way of communicating with me that’s very direct and clear. And it may not have come from her. I, yeah, people always, they take annual leave at times when you need them and, you know, these things happen and you just muddle.

Yeah.

Muddle through really.

What about since, what, you know, you talked an awful lot about the asthma nurse. So is that your main source of advice and information and?

She is great and she’s the one that got me on the Asthma UK website. 

My asthma nurse at home, she always says, “Just be alert because it can come on very quickly.” That was one of the most helpful pieces of advice I was given, actually, with regards to my youngest child.
Kate, and others, said that although they had been given information they found it difficult to take in too much when their child was first diagnosed with a long term medical condition or disability.
 

Kate was given a booklet when Tristan was diagnosed with cerebral palsy. She couldn’t take much information in and she felt cerebral palsy was more serious than flu-like illness.

Kate was given a booklet when Tristan was diagnosed with cerebral palsy. She couldn’t take much information in and she felt cerebral palsy was more serious than flu-like illness.

Age at interview: 29
Sex: Female
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You said that you’d maybe seen that Bliss info or that you were kind of otherwise it was dawning on you that there might be an issue around winter period illnesses and cold and flu’s and things like that. Do you remember what you, what was it that you understood about it?

I don’t know, I don’t think I really read that booklet that closely anyway.

Yeah.

I think I just thought oh it’s another thing to worry about and there’s not, to be honest I don’t think there’s much you could do to stop someone getting a cold apart from keeping them indoors and, and you yourself not going out. ‘Cos you, I could bring back a cold as easily as anyone else. So I don’t think I paid much attention apart, apart from normal things like washing your hands and all that. So yeah I don’t think I listened that much.

Do you, do you remember what you thought that it would mean, what, like how serious it was and what were the implications?

No I don’t think I did.

Yeah.

 ‘cos I didn’t read the book so I just thought, well, I kind of, you slowly start to think oh we’ve got another, he’s got another cold and I think he did get bronchiolitis once, which was quite bad and he had an inhaler for that. But in terms of the long term now I don’t think, ‘cos I, ‘cos, because he had this long term disability that was in my head all the time, that, in terms of him getting a cold I don’t think I really thought too much of it.

Yeah I was just going to ask as you said it was just another thing to sort of worry about?

Yeah.

Were you, was there a lot going on?

Yeah because I think…

Or is there?

‘cos, so he had the cerebral palsy and that was, he’s going to have that for the rest of his life, but in terms of the future I think in my head I was like, I can change that. I, if we do his physio I could change his future. Whereas if he’s got a cold I might want to, oh he’s got a cold, you know, he’s got it. It’s too late now he’s got it. You know there’s nothing I can do about it. So but like I said it’s yeah, it’s one more thing to think about and, and yes to a certain extent I didn’t go out much because it was as he got, as he got to kind of one to two years I kind of stopped going out a little bit with my friends, but when he was up to one I would still go out to the shops for things and, you know and I didn’t, I don’t have family here. At that point I didn’t have any friends so till I, you know cos we’d just moved to this area as well, so I kind of just thought well I can’t stay, I can’t stay in on my own all day.

Yes.

So I’m going to have to go out.

Yeah, life has to go on as well.

Exactly.
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