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.

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”.

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.

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.

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.

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.

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.

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.

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

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