Being diagnosed with asthma means different things to different people, and their need for information will vary depending on how long they have had the condition and what kind of symptoms they have. People who had dealt with asthma for many years, and those whose symptoms were mild or infrequent, often said that they felt they knew enough about asthma and how to manage and control it.
People who are diagnosed as children or young adolescents tend to have information filtered through their parents until they are old enough to understand it themselves. Tomas felt he understood enough about asthma when he was growing up and had never needed to search for more. “Explaining to me was through the doctor but with my parents there. So obviously they would explain it to them and then my parents would explain it to me in an easier way for me to understand. So… I pretty much understood it from the start.”
On the other hand, looking back, Philip says he thinks he wasn’t given enough information as a young person with asthma and has since used the internet and found out a lot more information for himself.
Philip doesn’t think he knew too much about asthma when he was a teenager, and wonders if this was because the staff talked to his mum, or perhaps he didn’t pay much attention.
Lisa also said that she wondered whether doctors and nurses sometimes didn’t tell you too much about it to avoid scaring you, as it wasn’t until she was older and did some research for herself that she found out how severe asthma can get. “People can die from it and I don’t think I realised until I got a bit older”. There were mixed views among people with both childhood and adult-onset asthma about how to get the balance right between reassuring people that you can live a normal life with asthma and at the same time bringing home to them the risk of a serious attack if they do not keep it well-controlled.
Andreane thinks people need to understand how serious asthma can be so that they can manage it properly. Doctors need to explain things, but without making it sound too scary.
Several people who had been diagnosed with adult-onset asthma said that they had not known much about it before their own diagnosis and some said that they made it their business to find out more about it so that they could learn how best to manage the condition. Jenny said, “Knowledge is control,” and Alice (below) said that if you can find out as much as you can, it will stop you from feeling frightened.
Time constraints in consultations with doctors, and the very different types of information that people might need, motivated many people to look for information themselves.
People said they wanted to find out general information about what the condition is, what the symptoms are like, what the triggers are, and about the drugs and treatments for asthma, in particular how to use inhalers correctly.
Asthma nurses were particularly valued for their expertise and the time they took to demonstrate inhaler techniques. Nicola’s asthma nurse had an airways model which helped Nicola to understand about her asthma and why inhalers work.
Alice wanted to find out as much as she could about asthma after she was diagnosed. Asthma UK leaflets were a helpful source of information; she now uses the internet. [AUDIO ONLY]
Dee spoke to friends and family, her GP and asthma nurse to find out more about asthma and help her learn to manage her condition. [AUDIO ONLY]
Val used the internet to find out more about asthma when she was first diagnosed, and through that got involved as a volunteer for Asthma UK.
Some, like Faisil who has had asthma since childhood, were interested to find out whether there were new treatments or alternative medications coming out, and about the latest research. Others who had had the condition a long time mentioned needing occasional reminders about things, or being prompted to look again for information when their symptoms changed.
Not everyone wanted to find out lots of information about asthma. This might be because people already felt they knew enough, or because they didn’t want to find out things that might scare them or make them feel anxious, or hear about other experiences that were different from their own.
Melissa is wary about finding information on the internet and says she only looks things up on a need to know basis.
Ann used a couple of websites to look up information when she first had asthma, but was trying to strike a balance between getting information, and trying to stop herself from feeling anxious. I thought, right I think this is enough for the time being.
Where to find information?
The internet is widely used to find factual medical information about the management and control of asthma, and also to find helpful tips and advice from other people about living with the condition, for example by using chat forums or social media. Stephen has recently been diagnosed and wanted to find out more about the condition so that he could know what to expect.
Stephen saw it as a new challenge to find out about asthma when he was recently diagnosed. He has looked on the internet, at first for factual medical information, then for other peoples experiences.
People used a combination of their favourite websites that they used when they wanted to find information (notably Asthma UK), and more general searches on Google. (See also below for how people assess the reliability of information they find).
Although many people find the internet useful, Tomas suggested young people may prefer to get information through videos and games rather than written information, and Lisa found a DVD helpful.
Lisa was diagnosed aged 12. The asthma nurse gave her a DVD which helped because she could see other children talking about having asthma. It helped her to get used to the idea.
Before the internet the main sources of information were books, pamphlets and leaflets, either provided by health professionals or support organisations. Some people still preferred written information from their GP or Asthma UK to searching online. Charles said he read leaflets from the GP surgery when he was first diagnosed and found they were all he needed, because his asthma is fairly mild, and he tends not to use the internet a great deal for this kind of thing. But other people said that since the internet has become widely accessible that they use it to look things up either regularly, or when needed.
As the main support organisation for asthma sufferers, Asthma UK is a popular and well-regarded source of information and support. Most people said they felt the website was very informative and accessible, and they also liked the fact that you can phone up the helpline and speak to an asthma nurse if you want to talk about your symptoms or find out information. Ann (below) said that she discovered information about the links between hormones and asthma through using the Asthma UK website. The health professionals she had seen hadn’t been particularly aware of this as a trigger for asthma.
Several people had become more closely involved with Asthma UK in a voluntary capacity giving talks to groups to educate people about asthma.
Ann was going through the menopause when she first experienced asthma. She later discovered through Asthma UK that a drop in hormone levels can trigger asthma in some women.
People with very severe or unusual forms of asthma are a small group who may have rather different information needs. They may develop a level of expertise beyond that of many health professionals. Jenny, for example, said her asthma nurse is “frightened of me”‘ because of her level of knowledge, but Jenny felt that was understandable given the complexity of her condition.
Ann felt the asthma nurse in her practice was not very expert and said she would rather see a consultant.
Hospital specialists might also learn from listening to their patients, some of whom have become quite expert at finding and assessing scientific evidence. Catherine, for example, said she might take to her consultant articles about trials from the medical journal The Lancet, and others mentioned reading articles about asthma in the British Medical Journal and New Scientist.
Faisil suggested that Asthma UK was most useful soon after diagnosis because it “just gives you the basics. It’s almost a beginner’s guide rather than for someone who’s maybe suffered with it for a long time.”
How do people assess the reliability of information?
People we talked to told us about how they decided what information was relevant to them. Many pointed out that it was important to try to find reliable and trustworthy websites, run by voluntary organisations or the NHS, that specialised in health information. Asthma UK, British Lung Foundation, NHS Choices and NHS Direct were all often mentioned.
Several people said it was important to know whether websites were driven by commercial interests such as drug companies.
Information from the United States or other countries was sometimes not seen as relevant in the UK.
Catherine uses the internet for information but says you need to be cautious and cherry pick’ what you find.
Hearing about other people’s experiences could offer valuable information and be reassuring, but there was also concern about misleading or unbalanced information or what Melissa called “one-off horror stories”. Eileen pointed out that you need to be careful about logging into chat forums where what you find may be “just giving you sort of granny’s advice, which really doesn’t work”. Jenny also advised caution.
Jenny says it’s useful to hear others’ experiences of medication but it needs to be balanced and evidence-based. Well-meaning people may say natural remedies are safer than steroids but steroids keep her alive.
Some people said that they felt that doctors and consultants may not always be receptive if you went to see them armed with information you had found on the internet. Julie said, “If you go to a doctor and you say, “Well I’ve looked at something on the internet‚ they’re inclined to say ‘Don’t believe everything you see on the Internet!'” She felt although it can be easy to be misled, equally it could save GPs a lot of time if patients were more informed when they went for a consultation. Catherine said that although “some consultants, as soon as you mention the internet, you get a roll of the eyeballs”, her new consultant listened carefully to her theory about why her symptoms had changed. “He was very respectful about the fact that I’d researched it on the internet and actually found the right conclusion.”