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

Effect on siblings

Children with a long term medical condition or disability can have frequent visits to hospital if they have complications from flu or flu-like illness. Seeing a sibling in hospital and feeling that parents are stressed can upset other children in the family as well as disrupting family life. Parents who had more than one child talked about the effect on their other children and what they did to support them.

Parents talked about the different ways their other children could be upset, despite their attempts to minimise the impact of illness. Anxiety, stress and feeling left out were common reactions. Jack’s older brother was quiet and withdrawn for a while after Jack was poorly in hospital with flu-like illness. Rebecca’s older son started bed wetting and having temper tantrums. Fiona says her three year old daughter finds hospital visits to see her younger sister with interstitial lung disease ‘hugely traumatic.’ 

Sometimes emergencies happen in the middle night. On one occasion, Rebecca’s son had an asthma attack in the middle of the night, seeing the ambulance arriving had a big impact on his brothers.
 

Both Rebecca’s sons seemed to react badly when their brother’s night time asthma attack meant he had to be taken into hospital by ambulance.

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Both Rebecca’s sons seemed to react badly when their brother’s night time asthma attack meant he had to be taken into hospital by ambulance.

Age at interview: 35
Sex: Female
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So I said to my husband rather than getting up, I said just get into bed and cuddle him because I want him not to be too traumatised, but he was, apparently he shook from head to toe all night and cried for the rest of the night so it really had a big impact, you know.

Has he not seen this sort of thing happen before? Was that the first time?

He’d seen him in hospital, he’s seen, ‘cos normally it builds up, it will come from say when he’s got a cold or a flu like illness, so he will start off being poorly with a runny nose and temperature and then we just think “Oh no,” you know that he’s going to start coughing tomorrow. And then he’ll start doing that and then his heart rate is going and then he’s all sweaty and the colours going from him and you think, “Oh okay it’s about time you take him in now.” So he’s seen it build up like that. But he’s never before woken up in the middle of the night, out of the blue with no signs before, so that was why it was I think scary for everybody.

Yes, yeah. And, but you said the ambulance was very quick.

They were amazing. Fabulous. But he still gets, he’s still really, he doesn’t like, he talks a lot about, “When he’s been in hospital Mummy. I really miss my brother.” And things like that. So he does talk about it a lot and I think it does have an impact. He, he  has made his own little picture diary at home, not long ago I was looking through and he’d drawn a picture of his brother in hospital with a, he’d put a little mobile above his bed and written, “My brother is in hospital and I missed him” sort of underneath it. So he does, yeah it does affect him.

And do you talk about it with him at home?

Yes, yeah.

Or with the whole family?

Yeah we’ve explained to him sort of why, what you know, what it is and why he needs to have his inhalers, and why sometimes he has to go to hospital, but that’s the best thing for him and that you know they’re just looking after him and not to be frightened of the, especially the paramedics that night. I think that’s going to be engraved on his memory so you know you explain that they’re there to help him, they’re not scary people at all, they’re there to make it better. 

It does make you wonder whether that might be something that has had this impact on the older one’s sort of tantrums and things lately, which are completely out of character. Whether that comes from fear.

Something else going on?

Yeah.

And worry, it could be couldn’t it? Because…

It could be.

That, the week after that incident the older one wet his bed a couple of times and he’s never ever, ever been one to do that.
Parents might try to protect their other children but their worries and stress could filter through to siblings, even those who were very young.
 

Harriet believes Alfie’s newborn baby brother picked up on the stress she was feeling. She had to stop breastfeeding earlier than she would have wanted because she was in hospital with Alfie.

Harriet believes Alfie’s newborn baby brother picked up on the stress she was feeling. She had to stop breastfeeding earlier than she would have wanted because she was in hospital with Alfie.

Age at interview: 31
Sex: Female
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It was really hard. And, I mean, from a practical side of things it was hard because I was trying to breastfeed my younger child but then I was in hospital and so, you know, even just thinking about that became a major problem. You know, how am I going to get to my child to do this kind of thing. So I gave up on breastfeeding earlier than I would have liked to and, yeah, it was really stressful. I felt like I didn’t have a chance with my younger child to do any of the things I did with Alfie so, which actually seemed indulgent when I had Alfie ill. Like, you know, going to baby massage classes or going for a walk around the park with some friends, you know. Didn’t do any of that when [youngest son] a new born baby. I mean we were just in hospital all the time. And I was exhausted [youngest son] was a really colicky baby. I think he picked up on the stress of it all definitely and in hindsight it was, and he cried literally, from the moment he woke up in the morning until the moment he went to sleep, he just cried all day long [laughs]. And so, yeah, it was, it was really, it was hard.
Children could feel left out or excluded when parents are focused on their ill sibling. Liam’s three year old brother has recently started to want his temperature to be taken too and also to be given medicine.
 

Mirella tries to involve her eldest son by asking him to help with looking after his brother.

Mirella tries to involve her eldest son by asking him to help with looking after his brother.

Age at interview: 36
Sex: Female
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Do you think that there’s been like an impact on your older son with you having to go to hospital and things like that, and as you said…

Yeah.

…do you take him with you or do you…?

Yeah I mean I’ve, I think you know most of the time has been lucky that either my husband has been on his way home or has been home or been sleeping and I’ve woken him up to go to hospital with the other one. I think the older one sometimes feels a bit left out because obviously the younger one is getting a lot of attention, whether it’s from me or the doctors, or everybody’s fussing over, and when your child is very ill and the other one isn’t although I do try to think of him and sort of get him involved and say well would you help your brother to you know get him a drink or give him a drink or give a cuddle or something. It, yeah they do feel a bit left out. 
Siblings might miss their brother or sister when they are in hospital. Ella’s sister visits her when she is hospital. If she is too sick for visitors she just stays for an hour or two. As her Dad says, “just enough so that she knows that Ella's okay, and what's happening, and she's not just feeling left out.” Usually the mum stayed in hospital too which disrupted normal family life.  

Evie’s older sister was taking exams when Evie was ill and in hospital. Her parents talked to the school and they gave her extra time.
 

Ella’s younger sister visits her when she is in hospital. It helps her to know that Ella is okay and she doesn’t feel left out.

Ella’s younger sister visits her when she is in hospital. It helps her to know that Ella is okay and she doesn’t feel left out.

Age at interview: 32
Sex: Male
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And obviously the other impact is obviously her sister. In the early stages, [sister] didn't really sort of understand why perhaps she didn't see me as much or mum was around as much, because Ella was in the hospital. But now she's older and she knows, if Ella has to stay in the hospital for a couple of days to a week, then it start to play on [sister], because we'll come home and she'll say "When's Ella coming back? Can I go and see Ella tomorrow?" And things like that. So yeah, it is noticeable effects that it can have.

Yeah. She's missing her. 

Yeah. Oh yeah.

Yeah. Okay.

And it's going to be the same for when obviously the new one comes, in two weeks.

Yes.

This one will get to know that obviously Ella's, you know, not your normal six year old or seven year old child, and she's got complex issues, and sometimes mummy and daddy will have to stay at the hospital with her so you won't see mummy or daddy as often as what you would normally. And things like that. And obviously then you get the questions, "When's Ella coming back home? And why's Ella in hospital? Why have you got to stop with her?" And things like that, so.

Yeah. Does she spend times in hospital when Ella is in? Does she goes to visit her?

Oh yeah, yeah. They always come up and visit. And sometimes she's there all day, she'll come in the morning, when - because [sister] at nursery at the minute, she's not in full term school like Ella. So she only goes three days a week in nursery. So the other days if Ella's in, on a Tuesday when she's off with me, if I wasn't at the hospital with Ella, she would come to the hospital and we would be there most of the day. And then on Fridays when she stays with grandma, grandma would come up and see her with her, and have a good half day to a full day again, visiting and playing and doing. Some days obviously when Ella's been poorly she's not been up to having visitors. So, when [sister] comes up she'll only probably stop for an hour or two, and then go. But yeah, just enough so that she knows that Ella's okay, and what's happening, and things like that, and she's not just feeling left out. 
Children were also affected in more positive ways by their sibling being ill. Anita has three older boys who she says “are absolutely brilliant with [Oliver]” who is two and has Down’s Syndrome. Hazel says that Oscar’s brother shows greater empathy and understands that they need to be in hospital with Oscar and doesn’t complain. She says, “He also is an amazing person.”
 

Oscar’s 7 year old younger brother is ‘incredibly empathetic’ and understands that his parents needed to be in hospital with Oscar.

Oscar’s 7 year old younger brother is ‘incredibly empathetic’ and understands that his parents needed to be in hospital with Oscar.

Age at interview: 41
Sex: Female
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Yeah. I mean our other son is incredibly empathetic. I think when you’ve only ever known this life then he understands if Oscar is in hospital we have to be there and it’s not. Oscar doesn’t want to be there. We don’t want to be there but we have to because that’s what is necessary. So our other son came down to [city] every weekend and he spent his entire Easter holidays, two weeks at the end of Oscar’s bed but never complained. He just played Sudoku and read and chatted to the nurses and sort of kept our spirits up. So you know he also is an amazing person. I think, he never once said, “Come home.” Or, you know, anything. He just knew that we were doing what we had to do. And every morning when I called him his first question would be, “How’s Oscar? What are his numbers on the machines?” And things like that. So you know, yes of course you, you don’t want to be separated from your child but, you know, at that sort of level of intensity you don’t have any choice and you have to be with the one who’s very ill.
Parents tried to reduce the effect of episodes of flu or flu-like illness on their other children. Janet and Phil tried to keep Liam’s brother to his regular routine at nursery whenever Liam goes to hospital. Liam’s mum said, “He needs a routine… his normality is key to this as well.”
 

Meg’s older sister also needs support when Meg is in hospital, her father takes time off work and an aunt acts as back-up but seeing her sister so unwell has been very distressing for her.

Meg’s older sister also needs support when Meg is in hospital, her father takes time off work and an aunt acts as back-up but seeing her sister so unwell has been very distressing for her.

Age at interview: 39
Sex: Female
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It definitely had an effect on my younger child, sorry my older child. She could definitely feel our stress you know you talk about being worried about Meg and something’s wrong with Meg, and what is it. And so there was definitely everybody felt, felt stressed about it and during our hospital stays which weren’t very short, they were always quite long it was, it was difficult, it had a big impact. My husband had to take time off work, because we’re not from the UK and don’t have family living that close by yeah he had to take time off work to look after our eldest.

It definitely has an impact on our family in terms of just our routine is off balance because Mum’s not at home, she’s now in hospital with Meg. My husband has to take time off work. If he can’t my sister-in-law who lives an hour and a half away, and my, and my brother take the time off work so it really affects the extended family. My stress levels I’m learning to deal with but I'm not very good at it. I seem to just focus on Meg and often don’t realise that my eldest is still so young, and doesn’t understand everything that’s going on. And she needs a lot of affirmation, a lot of time with her spent one on one and I can’t always give that. She finds the hospital visits hugely traumatic.

Right.

Because we’ve had very difficult times in hospital with Meg she has seen what Meg has been through she’s seen the needles, she’s heard the crying, she’s seen the vomiting blood. It’s affected her very, very badly so we’ve had to work on desensitising her to it really because it’s affected our life. So we’ve had to just try and give her as many coping skills at the age of three that we can give her. 
 

Oscar’s parents explained to his younger brother why he is in hospital. They try to be honest without giving him too much detail.

Oscar’s parents explained to his younger brother why he is in hospital. They try to be honest without giving him too much detail.

Age at interview: 41
Sex: Female
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And you have explained to the younger one?

Yeah we talk to him. You know, we don’t give him huge detail. We didn’t tell him how dangerous the situation was but he could see. I mean he’d often come to the hospital and Oscar would be  intubated and it’s not a great sight. You know, he’d be covered in  bruises and bandages and, you know, all sorts of things. They had so many lines in him. He was connected to so many machines. So, but my other son’s. At the start the first time he was a bit shocked and then after that, you know, we talked to him about it and asked him how he feels and did he have any questions and things like that. And we tried to be as honest as possible without giving too much detail. 
Rebecca knows that if her four year old son gets flu or flu-like illness he is going to be poorly and will need to go to hospital. She tries to prepare his older brother by reading a children’s book called ‘Topsy and Tim go to hospital’.
 

Rebecca tries to prepare her older child that she might need to go to hospital with his brother, and that he will be able to visit them with his Daddy.

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Rebecca tries to prepare her older child that she might need to go to hospital with his brother, and that he will be able to visit them with his Daddy.

Age at interview: 35
Sex: Female
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I think it’s worrying because I know what’s going to happen. It sounds bad because you know I know that if he gets it he’s going to be poorly so I get, I am quite prepared now, if, when he starts even getting a sniffle or anything I’ll pack both our bags ready just in case.

So I get ready, and then I will say to the older one you know, we might be going into hospital you know but it’s alright, and so prepare him and talk to him and say, “You know you can come and visit with Daddy, and it will be absolutely fine, and don’t worry about it. We might not be going but I’m just letting you know.” So I’ll sort of prepare him for it and  actually we bought a book, it was a Topsy and Tim book, so really old about Topsy and Tim going to hospital, one of those, one of the children was in hospital and [son’s name] loves that book and they both like to look at that. 

How have you used the book with them?

Just by reading it and then saying, “Oh you know oh that’s a bit like when you go into hospital isn’t it?” And you know, “What do you like about hospital?” and “Oh that’s good, they’re playing with toys and you know, do you do drawing at hospital?” And things like that, so he’s like, “Yes I do Mummy. I love it.” He always goes on about how much he loves it when we’re there so. You just think at the time he doesn’t seem like you’re loving it, but he calls it “The doctors with the beds,” he won’t call it hospital.
On Christmas Day, Michele felt torn between being with Jack who was ill in hospital and seeing her older son who was at home. She was glad the ward sister told her to go home for a few hours while Jack was sleeping to see him.

Often grandparents or other close family members helped to look after and provide support to siblings during illness episodes. Parents were aware that their other children might need reassurance and attention, even if they seemed to be coping reasonably well.

See also ‘Home and social life’.
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