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Parents of children with congenital heart disease

Talking to health professionals

There is no easy way to tell a parent that their unborn baby or child has a congenital heart defect. But how parents are told can have a powerful impact on their state of mind, coping ability and future relationship with their child's medical team.

Communicating well with parents about their child's illness is a special skill. As one of the mothers interviewed said, 'Worried parents aren't rational, they're not thinking straight. They're not understanding what's being said to them. They need things repeating. They're probably not even listening'.

Parents we interviewed spoke very highly of the doctors who cared for and treated their child. Many felt they had excellent relationships with their child's cardiac care team. Many doctors had taken time to explain their child's diagnosis and treatment options to parents in a way that they could understand. They had repeated information, drawn diagrams and even used a model of a heart. 

One mother comments that the communication with the cardiac care team had been excellent, that they had provided emotional support and built a close relationship with their family. Another couple appreciated the open and honest approach of their son's consultant and said he was always accessible.

 

Comments that the communication with cardiac care team had been excellent and that they supported...

Comments that the communication with cardiac care team had been excellent and that they supported...

Age at interview: 5
Sex: Male
Age at diagnosis: 2
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OK. I think our communication, right from sort of meeting  the doctor here, up here and down to the specialist hospital I think they were all wonderful, I really couldn't fault them. they had time for you. I think they know what you're going through, they work with these children with  heart disorders every day and, I really couldn't fault them. They were there for us, they answered our questions, they were there emotionally for us as well. You build up a relationship with them and they were friends towards you. And I just felt that there was genuine care from them really and the support, I really, I couldn't fault it, I really couldn't fault it. They really were excellent.

 

Their son's consultant is very open and honest with them and accessible.

Their son's consultant is very open and honest with them and accessible.

Age at interview: 3
Sex: Male
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Mother' And that's one of the big plus points, you feel that you, having read about Bristol and the surgeon there wants them to I don't know actually being narrow, narrow minded and just wants to get on with things himself, Felix's surgeon appears to us to explore all avenues and is willing to take on as much advice as possible.

And he is very, very open. He's not, or we certainly didn't feel, our experience is that they're not, haven't been guarded in anything that they've said to us and if we've asked things, they have been very informative and have gone out of their way, haven't they? [Father' Hmm]. yeah to give us all the information that we've wanted and, and they are accessible to you. It's not just you, your appointments, if you've got any problems between appointments then you can get to speak, certainly get to speak to the cardiologist on the telephone or actually go and see them at very short notice.

Parents we talked to stressed that when a child is first diagnosed, they need information about their child's illness to be communicated in simple language. Many had found the terms and abbreviations used very difficult to understand. One couple describe the difficulties they had understanding the terminology and not feeling able to ask for explanations. 

 

Initially found the terminology used by doctors difficult to understand and didn't feel able to...

Initially found the terminology used by doctors difficult to understand and didn't feel able to...

Age at interview: 3
Sex: Male
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Father' There was a lot of  terminology on the letters that we received, obviously we're going straight for the dictionary. [laugh] 

Mother' Yeah and they weren't in the dictionary, were they?  And things that you didn't know [Father' Right] And they were always feeling for his liver and I've never know why they felt for his liver [Father' Hmm] and they would say in the report, two centimetres, something, something and you wouldn't know what that meant [Father' No] why should his liver be there and his what was it, hands and feet are not clubbed, well what did that mean.

Father' Terminology to the doctors and the specialists is everyday language, [Mother' Yeah] and when they're talking to each other sometimes, you think they're talking a foreign language. You're just sitting there not knowing what they're talking about and they come, they use numbers and letters and...

Mother' Yeah, and like the heart beat things and two fifths and did,...oh, I don't know, it was just.

Father' With all the good will in the world, they haven't got time, when they've got 20 other children to look at. They haven't got time for you to keep stopping them, interrupting them, although you want to because you want to know all of the details, what does that mean? That the doctors and they're under such pressure to get through that day. So you can't keep interrupting them because so you're stuck in a dilemma, that you want to know what all these things mean because they don't, you don't get a piece of a paper, which would be nice, a list with all the terms on it so that you could look.

Mother' I think they are quite, I think the new heart book, 

Father' Yeah, yeah, but...

Mother' It's got those in.

Father' ...but when you're just going into it, in the first time, you haven't got the heart book, you only get the heart book afterwards sort of thing, or during. On your first appointment, it would be nice to have a little piece of paper that tells you all the things that they're talking about. [Mother' Hmmm] You know the terms.

Mother' But they often, like, tell you don't they to take notes or something about what they're saying but you feel too silly to do something like that, sitting there writing it down, but you forget don't you, what you said... and then...

Father' Well a lot of the things are a blur.

Mother' You just perhaps are so shocked by what they say; you forget to ask what it means or something like that.

One father admits that it can be difficult for doctors to find the right approach. He appreciated the direct and straightforward way in which their son's consultant had told them that he needed open heart surgery, whereas his wife would have preferred a more sensitive approach.

 

Comment that different parents prefer different ways of communicating with their child's doctor...

Comment that different parents prefer different ways of communicating with their child's doctor...

Age at interview: 4
Sex: Male
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Mother' I would probably say 'I have to tell you these things because you need to know but it's very uncommon'. I, think some people who are very clever at their jobs, their bedside manner is not very good because they're, they detach themselves from it. And doctors would say 'Well that's the nurses are there for'. I'm also saying it as a woman but, if he could have possibly said to me, 'Look, [parent's names], 'This is going to happen, this is going to happen, this could happen, this is one of the side effects, this may not, but we need to tell you', but no he had to tell us but a little bit more human perhaps. That's, because we're, we're looking at him, he's holding our child in his hands basically, all of them are, just come out of that doctor's thing and be human perhaps.

Father' But again it is different when he doesn't know us from Adam. I, again I think he's better now because we know him better.

But again, I think the other thing is different people want different things [Mother' Hmm], I was quite happy with him in a way [Mother' Being straight] straight whereas [my wife] would have been a bit more, so it's difficult to actually say to the doctor's well this is what you've got to do or this is what you haven't got to do because everyone's different aren't they? So it must be pretty hard for them at the end of the day. No doubt about it.

Good communication during times of stress can make a difference to parents. One couple describes the extra effort their child's surgeon made in communicating with them when she was having her operation. A father explains that poor communication between the nurses on the ward about his son's medication and feeding requirements had made a difficult situation more stressful than it needed to be.

 

Describes the extra effort their child's surgeon made in communicating with them which they said...

Describes the extra effort their child's surgeon made in communicating with them which they said...

Age at interview: 3
Sex: Male
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And the other funny thing was when the consultant came who was going to be doing the operation, that was the first time that we'd met him, and he walked on to the ward and I was holding Miriam and she looked at him. She looked him up and down and said 'nice coat' and had us all absolutely in stitches. The way they can just break a moment. We were all stressed up to our eyeballs and she said 'nice coat'. It was a tweed jacket, as it turned out, it was very funny. Slightly threw us all. He was lovely, looked much younger than we were expecting him to be, but then we saw him wandering around the corridors. Once we left to go and wait however many hours it was, we then saw him talking to other parents in the corridor and things. And every time we saw him, which was twice, we kind of looked at him and thought shouldn't you be operating on our daughter? But he saw us, recognised us and said, explained the situation, which was lovely for somebody to, he needn't have bothered, he didn't need to explain himself, so that was a lovely touch. 

And he had a lovely conversation with my husband as well about his family and he's got children and how difficult he perceived we must have found it. And little touches like that, lovely, really, really nice.

 

Felt communication between nurses on the cardiac ward could have been better.

Felt communication between nurses on the cardiac ward could have been better.

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Cannula, right cannula. So they put this cannula in for Vikram in case of emergency they won't have to start looking for veins at that point. So they put that in and they bandaged it all up.

Now that's the first time we've been in hospital. We've never been in hospital before. We won't know what a cannula really is but they told us what the cannula and why it is bandaged up and all this. We didn't know that, for example, that had to be redone every day, re-bandaged. But it never was bandaged, or it never was re-bandaged, it wasn't done up again. For 3 days it didn't happen. Now each time, he would lie like this and when he vomited his milk out the milk would go on that bandage, some of it would soak through, seep through more and more and get soggy and a bit, after 3 days the thing starts stinking. So we go to the nurse and say, 'See that's thing is stinking, can you do something about it?', 'It's not my shift'. 'Ok. Fine can somebody do it?', 'Yes'. One day goes like that then somebody comes and says 'oh has nobody been doing anything about this?'. We've been crying our hearts out for somebody to do something about it. 'Okay, then somebody does. And you see this guy's hand all shrivelled up and it's bad. And it's so bad, the way it's all become soggy and wet and obviously you'll see that if your hand is. I say 'oh that's pathetic' That's not pathetic, the service is. That's what I mean when I say, the nurse's job is not just a job. I mean they are doing their job, they are coming, they are bandaging, it's not that they're not doing it but it's more than that. It requires some patience and it requires some dedication and some responsibility. Not everyone can become a nurse. They should be, anyway.  

And when you go, when one person finishes a shift, he has to ensure that the next person who is taking over knows, or rather the actual take-over, the actual transition is very smooth. They have to ensure. Half the time we have to go to this person and say, 'This is what happened in the previous shift, can you do something about it now?'  

You would think that was the basic, that was what you would expect and if you have to fight for that. Again, they have done a great deal for us. I mean they have, obviously they have helped our son.

In some cases, communication between parent and doctor could have been better. One mother explains that the way her child's doctor communicated her son' diagnosis was not helpful and suggests a way that would have been better.

 

The way her child's doctor communicated her son' diagnosis was not helpful and suggests the way...

The way her child's doctor communicated her son' diagnosis was not helpful and suggests the way...

Age at interview: 2
Sex: Male
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I think, again it's really difficult, because it's not their fault and no matter what happens it's not their fault. They can't take your grief and your pain away. And I think sometimes we expect them to and they can't. But I do think it would be really helpful for the consultants to get some sort of training or some sort of guidance on giving a diagnosis to parents. Because it is such an awful time. That the way they give the diagnosis, it could maybe in my case it was given really badly, it was a really negative bad experience, Because the doctor clearly had never done it before. And the doctor was really distressed, and he was really upset and I was really upset and it was a really horrible, horrible, horrible time for everybody, And I felt sorry for the doctor never mind myself. And I think if he'd have been given some training on how to give me that diagnosis it would have been a lot better for everyone concerned. And I felt bad for him really, because it must be awful to tell parents this is what's wrong with your kid. And then, I don't think they're given any training in how to do it.  

One of the things there is supposed to be, it's improving I think. So how would you have liked for him to have told you?

Well first of all I'll tell you the way he did tell me. He just sort of fidgeted and was like "Oh, god, I don't want to tell you this but I've got to", "Oh this is really awful, how do I tell you, oh I'll just blurt it out and tell you, your son's got this condition and it was just... now if he'd just sat us down really calmly like he does this every day. "I'm just going to tell you what's wrong with Joe, and then I'm going to go away for half an hour while you have a cup of tea. And then I'm going to come back and talk to you and I'll ask any questions and we'll tape it so you can take it home and that would have been great and he could have told me and I could have sat in the room with [my husband], had a cup of tea, and then thought, oh, and if he'd come back half an hour later and said now I'm going to tell you again, and I'm going to tape it and I'm going to write it down and then you can go home and then we'll meet again in a week and you can talk to me then or you can talk to some, anybody, it doesn't have to be him. I know they're busy. It doesn't have to be him. And we'll meet again in a week, and we can talk again.  

That would have been great in an ideal world but I understand they haven't got that time. And, or have you? It would have made a big difference I think. I think the fact that I had nothing to bring home, other than my memories and my memories weren't clear.  Because all my memory was, was fear. I think in a very, very, very, distressing situation having to rely on your memory is not a good thing, not for the hospital and not for the parents. And certainly not for the baby. So that needs addressing I think.

The way the cardiac care team had communicated with children was also important. One mother recalled the way doctors talked to her son and how they always had time for him. She remembers that once, her son's consultant had stopped his car when he was leaving the hospital car park to chat to her son which had made him feel very special.

 

Describes the way the doctors talked to her son and explained that they always had time for him.

Describes the way the doctors talked to her son and explained that they always had time for him.

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They always used to sort of tickle his tummy while they was listening to him and say silly things, doctor's looking in his ears, they used to say 'Oh we've carrots growing today, Luke' or 'Have you cleaned you ears?' They always used to play with him and ask him what he'd been doing either at nursery or at school. Ask him about his home life and his food and 'Have you been to MacDonald's?' and 'Where are you going on holidays?' and 'What are you doing today?' They always had plenty of time for Luke  which is, I think really important to build a relationship and it felt like we'd got a relationship with the doctors rather than just going to see a doctor. They'd always got time for him. We've  some of the time we've seen the doctors down the corridor and they've stopped to pass the time of day with Luke to build Luke's confidence with the doctors, I think is extremely important and they definitely had Luke's confidence as well as our own.

After appointments, parents may have questions or concerns that they need answered but may not feel able to contact the consultant to ask questions. One mother explains that she sent her consultant an email detailing her questions and concerns and he telephoned her at home the following afternoon, and that made her feel very reassured.

 

Explains that she sent her consultant an email detailing her questions and concerns and he called...

Explains that she sent her consultant an email detailing her questions and concerns and he called...

Age at interview: 4
Sex: Male
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When I found out about this second operation, the mitral valve. I came back and I was reading everything and I was on the Internet, everywhere I was looking. And then I typed up this letter to send it to [our son's] consultant, I think I might have emailed it to him. All these questions I had; can you please tell me this, why was it not detected before, has this just happened, was he born with this and you've only just discovered it, is it something that's happened in the meantime and so I sent him all of these questions because I said I'm completely confused, I don't understand, how come I was so unprepared for this and I thought, oh gosh, wonder when I'll get a response.  

And then the next afternoon, he rang me up. It was brilliant. He rang me up and he was chatting through it all and talking, talking, just explaining everything to me. And I came off the phone feeling really much more reassured because when we were at the hospital, after the catheter and he told me, I just wasn't thinking straight, I just went to pieces. My dad was there with me. And my dad said to me, 'try and stay calm, he's got options'. So all I remember is my dad saying that, he's got options. I just couldn't think straight, I just couldn't, I was just. So when I sent this email to the hospital and then he rang me up the next day, with all these questions, that was just brilliant. I felt very reassured because he'd done that. I thought that was very good of him to do that.

Mothers may have frequent contact with their health visitor during their child's early months of life. Several mothers stressed how important it was for health visitors not to make mothers feel a failure if they were having problems feeding their baby. ( See ‘Sources of support’  for more experiences with health visitors, nurses and doctors.)


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Last reviewed July 2018.

Last updated December 2011.

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