Getting information about burn injuries

This section covers:

  • Information from healthcare professionals
  • Preferences on the amount and detail of information
  • Own research and peer sources of information

For some of the people we spoke to, understanding what was happening to them and why was very important.

It was important for some people that they were given plenty of information before they made decisions about treatment, so they were able to make an informed choice. A few people had been able to have input on their own treatment soon after the burn had happened, but this had not been an option for everyone. In initial treatment decisions Helen X was able to choose to not have a skin graft, whereas others, such as Gary, had no involvement because they were unconscious.

Information from healthcare professionals

It is common for a person who has been burnt to be given a lot of information regarding their treatment and care options by healthcare professionals. This can be overwhelming at times and the information difficult to take in. It was appreciated when there were plenty of opportunities to ask healthcare professionals questions about treatment and recovery.

Helen X asked her doctors and nurses lots of questions about her treatment. She said this made her feel more in control of her health.

I’m quite a curious sort of person, so I will ask a lot of stuff. How the doctors actually got out of my room the next morning without me asking and what's what with this and what's going on with that and how, you know, next stage is. And so yeah, I’m a naturally curious person, so I would want to know everything that's going on. It's like, for example, I had to wait. I think it was a week before I went down to theatre for my skin grafts, and I wanted to know ‘why did I have to wait so long?’ And the doctors are brilliant. They explained it all.

It's like things like your notes and stuff, you know, always asking, you know, the temperature gain, temperature and the blood pressure and stuff like that, why is this happening? Why is that happening? I’m not constantly why, why, why, child seriously because it's just one of those things that I really think you need to understand how your body works. If you understand how your body works and what the med professionals are doing to help you get better, it puts everything in a picture then, and it gives you that journey, it gives you that, you can see where you're going rather than being in like in a fog and not knowing or not understanding what's going on. So, I think the more you understand about the process, the healing process, what the medics are doing, what the nurses are doing, why they're doing it helps you to understand the process. It gets you healed better. And maybe that's helped with my mental attitude as well was because I felt I had a degree of control over and a degree of decision making. Then I felt that helped me as well.

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When Helen X was first told by a nurse that she had been burnt, she did not believe it as she could not feel any pain. She told us that her nurse was very good at explaining what had happened to her and that her burns were “so deep” that her nerve endings had been damaged.

Some of the people we spoke to told us that they appreciated it when their doctors and nurses explained things to them clearly and used simple terms. Helen Y recalled that healthcare professionals sometimes showed her diagrams and sketches to help her understand.

Abi told us that sometimes the doctor would use medical jargon and described her son’s burns as “superficial”. It wasn’t clear what this meant and so she looked it up online along with the different degrees of burns. Sabrina was first treated for burn injuries abroad, and there was a language barrier which made it more challenging for her parents and healthcare professionals to communicate.

Helen Y said she “really valued” it when doctors were “clear” and “plain speaking”.

And I do remember it being a shock that he told me I needed surgery, and asking him lots of questions, which he was brilliant at answering, I’ve always thought-, and I think he does a lot of surgery on children, he’s really good at explaining in simple terms what he’s going to do, what the results might be and all of that, yeah.

In fact, an accident I had a few weeks ago, I was just bamboozled at what on earth they were telling me, didn’t really understand it. So, yes, I really value clear, yeah, plain speaking and answering questions really well and honestly. Yeah, really, really value that.

The whole team at that hospital, maybe led by him, have been always absolutely brilliant at explaining what on earth is going on in very simple language. And, you know, even using kind of sketches and things if a question that I ask can’t be answered in words to show me even more clearly what’s going to happen. So, no, really, really value that.

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For those we talked to who were children when they were burnt, information tended to be directed at their parents. Tara was 2 years old when she was burnt and the doctors spoke mainly to her parents. This continued as she grew older and Tara said she found it difficult transitioning to adult care because she was not used to doctors speaking directly to her. Sabrina felt she was old enough to understand what had happened to her and remembered the fire, but doctors did not consider her old enough to explain her care to her so she “didn’t really understand as much as I could have”.

Tara felt that sometimes the doctors would speak to her parents and not involve her much in the conversation.

But I think the time I found it the most stressful was when I was 16 and I transitioned from the children’s hospital to the adult’s hospital and I went to an appointment and the doctor spoke to ME, and I was like “Why are you talking to me? I’ve got no clue what you’re on about.” Because actually, as much as our surgeons were great, they didn’t talk to me first, they talked to my parents and my parents would be like “No, can you include her in the conversation?” You know, and so I went into this room thinking “Oh” you know “I’ll go in’ you know” “I’ll take my top off so they can see my back and my chest and look at my neck and everything. I’ll just nod along to what they’re saying” “my parents’ll you know, agree to something, I’ll agree because I know they know what’s best and then, when we leave the room, I’ll ask them to explain in the care what he was on about.” And actually, I got there, and my mum stopped talking and I was like “Why are you not talking? What are you not having this conversation with him?” and I suddenly was like “Oh! This is up to ME! Like, I need to start understanding more why we’re doing things instead of being passive and just letting people do what they want to me.” And I think that was a big learning curve, was I suddenly realised how little I knew about my own body.

I want them to talk me through what they’re doing and how they’re doing it. And for me, that’s always worked with my anxiety, in that they’re talking me through what’s happening at each stage and, actually, I’m in control. So, if I say ‘Actually, can you just pause a minute and explain’, or ‘Is this going to hurt?’ that’s the big thing, ‘Is this going to hurt? You need to be honest.’ My mum was the first one saying “Yeah it will. Yeah, it will but it will only last for this amount of time and I’m here with you whilst it happens.”

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Knowing what to expect after being discharged was important for people like Rhian and Marilyn. Frazer said that having information about cleaning wounds and changing dressings meant that he didn’t feel “panicked” about it and instead could “be done with it and then go back to having a good time”. Rhian appreciated being able to get in touch with services if she had any new or ongoing concerns.

Preferences on the amount and detail of information

There were different views about how much and what types of information were most helpful.

Some people we spoke to, like Helen X, wanted to be as informed and involved in decisions about treatment as possible. She felt that having a better understanding of the situation was an important way to make sense of her experiences and cope better. Jeff felt that he “could have dealt with it better” if healthcare professionals had “told me what to expect”. Michael told us that it was important that he was informed with updates on his burns every day whilst in hospital.

Tara found that, even as a child, she was “allowed” and encouraged to have a say in her treatment and ask if there were options they could try instead.

I never felt like they were just signing-off on surgery and I didn’t have any say or I didn’t know what was going on, which I think’s so important, because I think a lot of the fear around young people having surgery in hospital is that they just don’t understand what’s going on and actually surgeons are so good at talking to parents and explaining to them, and sometimes they child’s forgotten about a little bit and they’re kind of just expected to go along with it, and actually, you know, who wants to have surgery if you don’t know what the point of it is. So, I think that’s definitely where we did things right as a family is that we were always very open. And I was always allowed to say “No, I don’t want that.” That didn’t mean that was the answer, but I was always allowed to be like “Mm, not really feeling this” and we’d look at it again and see if there were other ways to do things.

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For some, being well informed helped them feel more in control. After India was burnt, she felt her dad “went into research-crazy mode” as a way to manage feelings of worry.

Others, like Holly, felt that too much information could be overwhelming. Abi also recalled worrying about possible treatments for her child that didn’t end up being necessary, and complications for his future that haven’t happened.

Holly thinks it’s better if healthcare professionals give a little bit of information about burn injuries at a time.

They didn’t tell me at the first appointment, ‘This is going to be a long journey’ because probably that would have been-, I was already so sort of traumatised by it happening, if they’d have said, ‘Well, we’ll still be seeing you in three years’ time’ that would have been an awful thing, I think, to know at the time. So, they probably did the right thing in that, like you said, they were sort of drip feeding a little bit the information.

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Within a family, there could be different views on what is a helpful amount and timing of information. Niamh, who was burnt when she was 10 years old, thought it would have been better for her to know in advance when treatments or dressing changes were going to be painful “so I know what was coming”. Niamh’s mum, Lindsay, however, felt it was better for her not to know because she might have otherwise become worked up about it: “the way it was done, yes she was annoyed, yes it hurt, but it was done in seconds”.

Niamh would rather the doctors told her that her dressing changes were going to be painful, but her Mum felt it was better for her not to know.

Niamh: I think I would have rather them told me what they were going to do so I know what was coming.

Yeah, was it a bit unexpected then?

Niamh: Yeah.

Mum: Now, stepping in as her mum … I’m glad they done it the way they done it because I think then it might have been ‘No, you’re not touching my hand, you’re not touching …’ and then it becomes a … quite a traumatic experience going into it. Whereas, the way it was done, yes, she was annoyed, yes it hurt, but it was done in seconds.

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Information from research and other people with burn injuries

A few of the people we spoke to had done their own research about burn injuries once they returned home from the hospital, including reading books and research journals online. Gary said he built on what he had learnt from nurses to then do his own research on burns. Helen X told us it was important for her to read a lot about specific treatments before she felt she could make an informed choice. She said that having knowledge about her treatment allowed her to feel have a “degree of control”.

Helen X found it useful to research her treatment options online before making a decision about whether she wanted a skin graft.

And I had a lot of literature as well dropped in for me to read because I’m just too curious. And I said if I get away without having the back of my hands grafted, if I could let them heal naturally, would that be a possibility? And he said “well, normally, we would graft them”. But I said, look, no. “If you can help me understand how I could help myself to get them healed better on my own at this point”, and when it actually came round the day of the skin grafting, he looked at my hands before I went down and said “You know what? I think we're going to let these heal on their own”. He said, “You're doing really, really well”. So that was a little bit of treatment that I really requested, but only after I’ve read a lot of information. I’m not sure how other people, whether they would naturally give out the information, or whether people don't want to know or don't ask, but I always found by asking and actually understanding what happened with and how burns heal. It helped me make a lot of decisions to help myself for sure.

I wanted to help myself as the master as much as I could. But I think you need to make an informed choice, an educated, informed choice as well. And that's why I was really glad I had time. Like, they said they couldn't do any grafting till six days because they wanted the underlying blood tissue to be starting to heal. So, the blood vessels were growing in, so they'd have a better chance of the grafts working. Then, if they'd done them too soon, the chances are they may have died. But having that time to think about things and do a bit of research myself, yeah, really helped.

Were there any other kind of informed choices that you made in regards to your treatment?

I asked the dressings to become less and less bulky if possible, and that was fine. And also, the hand slings, the ones where they put my hands up as well, I asked what could I do to get rid of those very quickly because those one make your arms ache, and they were gone within a couple of days.

I’ve learned an awful lot about looking after skin after a burn. I’ve learnt an awful lot about myself and my resilience, but I’ve also learned a lot, and I have maximum respect for the healthcare professionals out there that helped me through this. They were the best people in the world, and that's why I’m in a really good position, I think mentally as well as physically after the burns because they helped me through, and they, I always had an informed choice on my care as well, but that wasn't just them spoon-feeding me. That was me asking them what do I need to do too. It's not just the healthcare professionals’ job. It's your job as well to get better, and you need to do everything they advise you to do.

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Information needs could also change over time and circumstances, as people realised there were questions they didn’t know the answer to. Jasmine, whose daughter had been burnt, realised when they were on holiday in a warm country that she didn’t know the reason why they had been told not to expose the burn to sunlight, and hadn’t thought to ask before because “it’s not a common dilemma”.

A person with a burn may have changing informational needs over time as they age and experience new situations and circumstances. For example, some of the people we spoke to who were burnt when they were a child sometimes found it tricky to navigate their careers when they needed to take time off work for ongoing treatment. As someone transitions from childhood to adolescence, they may want more information about relationships or appearance, for example. Some of the people we spoke to told us that as teenagers they would research their questions online to try and find answers. Some people would use the internet or ask other people who had experienced a similar situation.

Saffron went online to learn about other people’s experiences of having laser treatment.

I’m aware of information out there and perhaps I’ve just not, for instance, before I got my laser treatment, I went on Dan’s Fund where they had a Burns UK website and just looked up some of the information. They had stories but, again, they’re actually stories about people who had done it, so I feel that I’m probably looking for that sort of information as well, as opposed to factual information on “This is laser treatment, this will do this, this, this.” But I want to know someone else’s story, you know, why they got it done and what it done for them and for me to see if that is a similar to me.

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Jasmine went to her friend, who was a dermatologist, for advice about managing her daughter’s burn.

So, I had to research everything, speak to my friends, speak to dermatologists that were friends of ours and ask them for their assistance and they were the ones that pulled through for me to help me. So, I went privately through just friends and one of my friends is a dermatologist and well recognised in her field and she has a daughter the same age as mine and she said to me “I want you to use this specific cream, this will help.” I got it through a friend, and I thought, ‘Jeez, I wish everyone was offered this. This is so helpful. You have someone who’s an experienced professional in their industry who does this every day and they’re giving me something, they’re giving me a gift. I went out and brought the cream privately.

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