Flu or Flu-like illness in chronically ill or disabled children
Hospital inpatient care
After being assessed at Accident and Emergency or on the children’s ward, some children were admitted to hospital as an inpatient because they needed more specialist care. While some only needed to stay in overnight, others spent up to ten days in hospital. Jack was seriously ill with influenza and spent three weeks in the intensive care unit (ICU).
Tests and treatment
While on the hospital ward, children were monitored closely. Depending on their long term medical condition or disability, children might be treated with intravenous antibiotics, nebuliser and/or oxygen masks, steroids and some needed to be tube fed. Several children had been given fluids if they were dehydrated.
Do you know what other treatment he had?
He was given some intravenous fluids initially…
Yeah.
…and that was put through his foot, which again was the only way that they could get a cannula in because he was dehydrated. It was in the foot…
Oh okay.
…and I had to hold him while they inserted, they tried in his arm and in his hand, which they couldn’t find a vein and obviously in an adult it’s quite distressing to have a cannula inserted, I’ve had it myself and it’s quite painful. They did apply anaesthetic cream but eventually they could only get it into his foot, so he was, he had a tube through his nose that he was connected to and a tube in his foot. So it was very difficult to pick him up or reassure him because he had all these tubes. So they did initially provide some extra fluid and I think they put antibiotics as well, just as a, more of a preventative thing really because they weren’t sure whether it was a bacterial chest infection or a viral infection.
Most parents spoke very positively about the care their children received while staying in hospital. Parents were sometimes closely involved in the care of their children while they were on the ward. Naomi gave her daughter insulin injections. Nia felt she could have been given more help by the nurses, especially for toileting and bathing of her baby when he was attached to drips and other wires. Fiona was able to look at daughter’s chest X-ray.
When he was very young they could have been a bit more pro-active in monitoring things.
Yeah.
They do expect if a parent is staying with the child, especially overnight they rely on the parent very much to do the monitoring of the child. If the child needs the toilet and is of the age to go to the toilet you take, even with a load of monitors attached you take the child to the toilet, not the nurse. Which for some parents you know I didn’t find that too difficult once I’d understood you know how to unplug the drip, and wheel it to the toilet with a child who needed to sit on a potty. You know that kind of thing, you become quite, you know you adapt quite quickly. But I know other parents who found it difficult and they didn’t like having to you know move around a cannula or you know have to deal with their child who’s got wires coming here there and everywhere. They just, they’re frightened of it.
Yeah well the doctor, the doctors who saw him on the paediatric ward were very polite. They were very understanding, the nurses, I felt could perhaps be there a little bit more. I think they were very busy, they left you to your own devices quite a lot so if the machine he was connected to a pulse oximeter which measures the oxygen saturation levels and his were frequently dropping well below the required level and the alarm would go off, and you would wait and nobody would come so you’d have to go and fetch the nurse. And “Is this okay?” You know, “Does he…” and eventually they put, I think they put him on oxygen for a period of time as well to improve the saturation levels.
Yeah.
So the doctors were very good when you spoke to them but I felt maybe the nurses could have been there a little bit more, and a little bit more responsive to things like the alarms going off.
Did that, did you feel, did that make you feel sort of that you had to be monitoring?
Yes.
And alerting them?
Yes and I learnt very quickly that if I didn’t, or somebody didn’t monitor what was going on and check for example if he was due medicines every four hours, you have to go and remind them that four hours has passed, “Could you please provide the next lot of medicines.” And on the children’s ward every time we’ve been there they’ve expected parents to administer the medicine. So they would provide it in a syringe but you would have to give that to your child, unless it was going in through a cannula. Any oral medicines that you would have to give yourself, which for me is fine but I know some parents found it difficult, speaking to the parents on the ward they didn’t feel confident necessarily in making their child take medicines.
Yeah, yeah.
Or in monitoring them, particularly at night when there was less staff on the ward. It was very difficult to get any kind of rest for yourself because as soon as an alarm went off you would have to get up, go fetch the nurse, ask questions, check throughout the night that he was receiving things like the paracetamol during the night, every four hours.
Naomi’s daughter usually has a room on her own when she is in hospital. Others shared a room or were on a six bedded unit which did mean a lack of privacy for parents during the night. Naomi’s daughter loved being in hospital as did Rebecca’s 4 year old son because there was a play room and play specialist and they knew all the staff. Sharon said the play leader was very good at distracting Henry who found hospital quite frightening because he needed intravenous antibiotics and blood tests.
All the nurses and the play leader on the ward is just the best. She knows my two daughters sort of quite personally really, she knows their names and, and sort of gets staff and they, when my daughter is feeling better you know she’s feeling better ‘cos she wants to go in the playroom or, and, but if she’s not feeling well they bring stuff to the bed, and there’s games there, there’s DVD’s so when she’s in isolation she gets her own DVD and a telly, and she gets lots of DVD’s to watch and stuff to do.
Sticking and colouring and…
And do you stay the whole time with her?
Yeah.
How parents feel when their children are in hospital
It was usual for parents to feel worried and stressed when their child was in hospital. Worries about their child’s health and also managing their child’s fears or watching them have treatment contributed to the stress parents felt.
And how have you sort of felt, how kind of, when she’s on the ward do you, how do you feel as parents during those times?
Pretty worried, I mean certainly in the beginning we, we’re more, we know where everything is now and we know, we know now when to worry and when not to if you see what I mean. So we know what’s good [baby noise] and what’s bad and stuff so I suppose we worry less
Yeah.
Yeah I don’t, I, you know we just keep our eye on the saturations, that’s the big thing.
Do you stay on the ward?
Yeah, yeah. There’s…
How is that facilitated? When, so how…?
There’s like a sofa bed type thing.
Is it in the room or…?
She’ll be on a ward, in her room, it’s in the ward on, on, next to her, like she wouldn’t…
She has her own room?
Yeah, yeah, no, no. Well she’ll be in ward with say two, two other children.
Yeah.
Normally. And next to each bed
Yeah
Is either like a sofa-y type thing that sort of turns into a bed of sorts or a kind of put you up little bed which is actually better and more comfortable than the, so yeah either me or my husband, normally me, my husband when I was pregnant, would stay with her on there.
Well the first few times when, when my younger son went to hospital and having the breathing difficulties he is not used to having a mask on his face, or given the nebulisers so he was very distressed and obviously struggling and screaming and being upset and scared, and then me never, I have never been sort of giving him inhalers or nebulisers. So then for me to learn how to do and actually you have to quite strongly restrain them, so sometimes there might have been five of us, five grown-ups to hold him still enough to give him the medication that he needs to be able to breathe. So that’s very, very stressful, when you see your, your child struggling and people pinning him down and then with the time he’s learned this is what happens, if I can’t breathe they put this on, and so he has a more relaxed approach to it then which makes it much easier for me to deal with.
But yeah, yeah, it is stressful and it’s scary and frightening but again it comes with experience that then when you have to do it all the time you sort of, you know what to do, how to help them and they learn “Okay, I’ll have this treatment and then I’ll feel better.” So then you just learn, learn the way of being in a hospital if you like.
Several parents, including Rebecca, also felt relief. She says, “I always think of it as a bit of a relief to be honest… I feel really safe once we’re in hospital. The minute you walk in I feel like they know what they’re doing, and they’re going to deal with it properly.”
Although parents usually slept next to their children, either in the bed, or on a pull out sofa bed or a chair, they said they did not sleep much. Some could get food from the cafeteria or there was a kitchen where parents could make drinks and a fridge where they could store food. Often parents relied on other family members to bring food in for them or to sit with their child while they went to eat. Parents are not usually allowed to sleep in the ICU or the high dependency unit. Susan stayed in a charity run house next to the hospital when her child was on the ICU.
While Ciaran was in hospital, were you able to stay there?
Yes, we were, thank god. For 10 days, they allowed us to stay in Ronald MacDonald House. And even though it’s only 30 miles away, it would’ve mean us having to, to go home every night and come over every evening so it- morning. So it was a huge help because both of us were able to stay there and. All the time. So we stayed there for two weeks. For 10 days. For 10 days, Ronald MacDonald House allowed us to stay there and it was absolutely fantastic, it was a life saver. And they should do that in more places, it’s amazing. It, it makes- it’s a huge relief. You don’t feel then, if anything happens during the night, then you’re close, you don’t have to feel that you’ve got to rush back. And both of us felt that we needed to be there. So it was all day, every day.
The hospital, with my younger son, so it’s just been the last few years the hospitalisation. Normally we, we have been in a room that has I think six beds, sometimes there isn’t any other children, sometimes there is but there’s your hospital bed and they have this sofa chair that folds up, oh no folds down to a bed, and normally the nurses at some point in the evening they come and pull it out for you. And then in the morning they help you to sort of put it back as a chair, obviously the children get fed and parents don’t. There is a room where you can make teas and coffees and there is a fridge where you can bring your own food and label it. But it is quite tricky actually to just keep yourself going and feed yourself because if you’ve got a very ill child and you are with them you can’t really walk to the hospital canteen to get yourself food. And if you haven’t got a partner or friends who can help you, then it, well obviously you can get a bit hungry. But then I’ll always be offered some toast and then the food my son doesn’t eat, I’ll pinch his dinner [laughs].
Parents were very grateful for the emotional and practical support that staff on the ward gave them. They too felt very well looked after. As Michelle said, “The staff were fab. They were amazing… they look after you as well.”
The staff were fab. They were amazing. I can’t, they saved his life, I can’t knock, you know, they were great, they were lovely. And it’s like they look after you as well as the child. And, I mean, it’s like Christmas Day they sat in the cubicle and this, this bossy sister come in and she was like, such and such, you know, and they said, “Oh yeah”, they, and I was saying to the staff, you know, about the other one, she said, “Have you got another child at home?” And I said, “Yeah”. “She said, “Get out”. And I was like, “What?” She said, “Go home for few hours and see your other child”. She said, “You’re not going to get a better qualified babysitter than me”. She said, “Go home. He’s fine. He’s not going to wake up, he’s going to stay fast asleep and be a good boy for me. Go home for a few hours”, and chased me out the ward. And I needed it. I needed to be told because I think a lot of times that you feel guilty leaving. And, but you’re torn because you’ve got another child. So, she was amazing. Like she, because we live in the city we’re not allowed to stay in the house normally, but she said, “No, this mum needs a room”. So I was there, whereas normally I would have to come all the way home and then go all the way back to the hospital if I needed to. So I felt like I’d got loads of support as well. And some, someone to lean on.
Tests and treatment
While on the hospital ward, children were monitored closely. Depending on their long term medical condition or disability, children might be treated with intravenous antibiotics, nebuliser and/or oxygen masks, steroids and some needed to be tube fed. Several children had been given fluids if they were dehydrated.
When Daniel was three months old he had a cannula put in his foot so that he could be treated intravenously with fluids and antibiotics.
When Daniel was three months old he had a cannula put in his foot so that he could be treated intravenously with fluids and antibiotics.
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He was given some intravenous fluids initially…
Yeah.
…and that was put through his foot, which again was the only way that they could get a cannula in because he was dehydrated. It was in the foot…
Oh okay.
…and I had to hold him while they inserted, they tried in his arm and in his hand, which they couldn’t find a vein and obviously in an adult it’s quite distressing to have a cannula inserted, I’ve had it myself and it’s quite painful. They did apply anaesthetic cream but eventually they could only get it into his foot, so he was, he had a tube through his nose that he was connected to and a tube in his foot. So it was very difficult to pick him up or reassure him because he had all these tubes. So they did initially provide some extra fluid and I think they put antibiotics as well, just as a, more of a preventative thing really because they weren’t sure whether it was a bacterial chest infection or a viral infection.
Nia felt the nurses could have been more proactive in monitoring her son’s care when he was staying hospital. She felt that some parents were expected to do too much.
Nia felt the nurses could have been more proactive in monitoring her son’s care when he was staying hospital. She felt that some parents were expected to do too much.
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Yeah.
They do expect if a parent is staying with the child, especially overnight they rely on the parent very much to do the monitoring of the child. If the child needs the toilet and is of the age to go to the toilet you take, even with a load of monitors attached you take the child to the toilet, not the nurse. Which for some parents you know I didn’t find that too difficult once I’d understood you know how to unplug the drip, and wheel it to the toilet with a child who needed to sit on a potty. You know that kind of thing, you become quite, you know you adapt quite quickly. But I know other parents who found it difficult and they didn’t like having to you know move around a cannula or you know have to deal with their child who’s got wires coming here there and everywhere. They just, they’re frightened of it.
Yeah well the doctor, the doctors who saw him on the paediatric ward were very polite. They were very understanding, the nurses, I felt could perhaps be there a little bit more. I think they were very busy, they left you to your own devices quite a lot so if the machine he was connected to a pulse oximeter which measures the oxygen saturation levels and his were frequently dropping well below the required level and the alarm would go off, and you would wait and nobody would come so you’d have to go and fetch the nurse. And “Is this okay?” You know, “Does he…” and eventually they put, I think they put him on oxygen for a period of time as well to improve the saturation levels.
Yeah.
So the doctors were very good when you spoke to them but I felt maybe the nurses could have been there a little bit more, and a little bit more responsive to things like the alarms going off.
Did that, did you feel, did that make you feel sort of that you had to be monitoring?
Yes.
And alerting them?
Yes and I learnt very quickly that if I didn’t, or somebody didn’t monitor what was going on and check for example if he was due medicines every four hours, you have to go and remind them that four hours has passed, “Could you please provide the next lot of medicines.” And on the children’s ward every time we’ve been there they’ve expected parents to administer the medicine. So they would provide it in a syringe but you would have to give that to your child, unless it was going in through a cannula. Any oral medicines that you would have to give yourself, which for me is fine but I know some parents found it difficult, speaking to the parents on the ward they didn’t feel confident necessarily in making their child take medicines.
Yeah, yeah.
Or in monitoring them, particularly at night when there was less staff on the ward. It was very difficult to get any kind of rest for yourself because as soon as an alarm went off you would have to get up, go fetch the nurse, ask questions, check throughout the night that he was receiving things like the paracetamol during the night, every four hours.
The play leader organises things for her daughter to do in her room when she is in hospital and cannot use the play room.
The play leader organises things for her daughter to do in her room when she is in hospital and cannot use the play room.
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Sticking and colouring and…
And do you stay the whole time with her?
Yeah.
It was usual for parents to feel worried and stressed when their child was in hospital. Worries about their child’s health and also managing their child’s fears or watching them have treatment contributed to the stress parents felt.
Ruth says she and her husband worry less than they used to when their daughter is admitted to hospital with breathing problems.
Ruth says she and her husband worry less than they used to when their daughter is admitted to hospital with breathing problems.
Sex: Female
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Pretty worried, I mean certainly in the beginning we, we’re more, we know where everything is now and we know, we know now when to worry and when not to if you see what I mean. So we know what’s good [baby noise] and what’s bad and stuff so I suppose we worry less
Yeah.
Yeah I don’t, I, you know we just keep our eye on the saturations, that’s the big thing.
Do you stay on the ward?
Yeah, yeah. There’s…
How is that facilitated? When, so how…?
There’s like a sofa bed type thing.
Is it in the room or…?
She’ll be on a ward, in her room, it’s in the ward on, on, next to her, like she wouldn’t…
She has her own room?
Yeah, yeah, no, no. Well she’ll be in ward with say two, two other children.
Yeah.
Normally. And next to each bed
Yeah
Is either like a sofa-y type thing that sort of turns into a bed of sorts or a kind of put you up little bed which is actually better and more comfortable than the, so yeah either me or my husband, normally me, my husband when I was pregnant, would stay with her on there.
Nia found it stressful watching her son’s reaction to having the nebuliser mask on his face. Now he is more used to it and it is much easier to manage.
Nia found it stressful watching her son’s reaction to having the nebuliser mask on his face. Now he is more used to it and it is much easier to manage.
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But yeah, yeah, it is stressful and it’s scary and frightening but again it comes with experience that then when you have to do it all the time you sort of, you know what to do, how to help them and they learn “Okay, I’ll have this treatment and then I’ll feel better.” So then you just learn, learn the way of being in a hospital if you like.
Although parents usually slept next to their children, either in the bed, or on a pull out sofa bed or a chair, they said they did not sleep much. Some could get food from the cafeteria or there was a kitchen where parents could make drinks and a fridge where they could store food. Often parents relied on other family members to bring food in for them or to sit with their child while they went to eat. Parents are not usually allowed to sleep in the ICU or the high dependency unit. Susan stayed in a charity run house next to the hospital when her child was on the ICU.
While Ciaran was in hospital his parents were able to stay in a charity run house next to the hospital.
While Ciaran was in hospital his parents were able to stay in a charity run house next to the hospital.
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Yes, we were, thank god. For 10 days, they allowed us to stay in Ronald MacDonald House. And even though it’s only 30 miles away, it would’ve mean us having to, to go home every night and come over every evening so it- morning. So it was a huge help because both of us were able to stay there and. All the time. So we stayed there for two weeks. For 10 days. For 10 days, Ronald MacDonald House allowed us to stay there and it was absolutely fantastic, it was a life saver. And they should do that in more places, it’s amazing. It, it makes- it’s a huge relief. You don’t feel then, if anything happens during the night, then you’re close, you don’t have to feel that you’ve got to rush back. And both of us felt that we needed to be there. So it was all day, every day.
Mirella talks about the facilities that were available for parents when she stayed in hospital with her son.
Mirella talks about the facilities that were available for parents when she stayed in hospital with her son.
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Michelle really appreciated the support she got from nurses, who told her to go home for a few hours to see her other child, when her son was in hospital over Christmas.
Michelle really appreciated the support she got from nurses, who told her to go home for a few hours to see her other child, when her son was in hospital over Christmas.
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