People in this study sought information so they could understand why things were happening to them, and this helped some of them to deal with their condition. Most people sought information at the time of diagnosis, or when new medications were added. Sources of information consulted by people in our study included online websites, healthcare providers, support groups, and asthma organisation counsellors and newsletters.
Some of the older people we talked to mentioned that the type of information available has changed over time. They recalled that fact sheets from healthcare providers were the only option before the event of the internet. It was not always the person with severe asthma that did the research. Sometimes it was a family member such as a partner or parent. For some people there was no pressing need to seek information, as having a family history of asthma was enough to clue them in.
John just wanted explanations.
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I just wanted answers, and if it meant that I could solve the problem, if we could get to the bottom of it… But like I said, it was probably a bit beyond anybody giving me an answer, because, like I said, what more can you do than park yourself at [hospital] for eight days and do every test with, under the– their top respiratory- is that the right word? Specialist.
Information allowed
Marg to achieve a sense of acceptance of the condition.
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So I am a great believer in educating yourself about things, and I studied and I talked to people and I went for counselling. I went and read, I went to herbal places and that to learn about asthma. And my life really started to change. I felt the best I felt for probably fifteen years or more because I had a great understanding and stop blaming myself for these asthma attacks. And I learned more about what it was in and what it does to you.
Regarding online information, people we talked to mentioned mostly negative aspects. They felt that you have to be selective about the information found, as much of it is irrelevant. Some people looked specifically for evidence-based sites, whilst others found online sites to be quite technical.
Marion opted for organisational websites rather than online platforms.
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I would be very wary about the internet. When I was diagnosed with my knee problem, I started searching for, you know, pigmented villonodular synovitis, and what I got was a lot of very negative stories about pain and suffering, and you know, procedures that didn’t work and stuff. And I just thought, oh I don’t need this. You know, I think the internet tends to attract people who are having difficulties. You tend not to get the success stories. So when I Google something I tend to go for medical journals or medical sites, you know. Like, you know, the Arthritis Foundation or the Asthma Foundation or something like that where you can get some reasonably scientific-based information.
Some people in the study preferred to see their healthcare provider to get information rather than try and find the information themselves and valued the healthcare provider working through the information with them. Denise felt that people with asthma will accept their treatment better if educated by healthcare providers. People we talked to told us that information transfer requires the person to establish a good relationship with the healthcare provider. There was a range of opinions about the need for the person with severe asthma to ask questions, with some seeing it as essential and others taking a more passive approach. Some of the people we talked to, although willing to ask, didn’t feel they got answers. Information was provided not just by doctors but also other healthcare providers such as physiotherapists.
Allen asked the GP questions but didn’t feel he got answers.
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Look, if I thought it was going to help the asthma I’d ask them any question. I often have, and your general GP can’t answer you. Just different questions. One about atmospheric things. Oh yes, oh they might have a… they might… they don’t know, they don’t give you an answer.
John G found that the staff at asthma clinics were useful.
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I’m the sort of person who would talk to anyone. I have no compulsion about asking people questions. About talking to them, and finding out why they’re giving me medicine, and what the medicine does. I always do that.
And he was giving me stuff, and I was asking him why and all this. I did a little bit of research on the internet, but I found that that really didn’t go any further than what I found out from this specialist. And from the people there, the treating nurses and doctors and that. I found that the clinics, the severe asthma clinics are the places to go
Marion also got information through pulmonary rehabilitation.
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I’ve got some information through attending the pulmonary gym. You know, the physiotherapists there impart quite a bit of information. My brother, was telling me, you know about the science of the drugs and stuff, and the difference between the bronchodilators and the steroids things. Yeah. I wouldn’t say I have a comprehensive understanding.
For severe asthma specifically, people in our study said there was little information to be found, particularly about the lived experience of being a person with severe asthma, although some were aware that a website was launched recently. Several people we spoke to wanted to be able to compare themselves with others to get some context as to what is “normal” for someone with severe asthma.
Lauren wants to see how she compares with other people with severe asthma.
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For the most part, like, I know people that have mild asthma and what that looks like, but yeah, to be able to, like, see, like, where I fit in comparison to everyone else, would I think give me… Because I feel like I can only say about my asthma, but I think the best way to do it would be against something. So, I’m like, “Is it severe? Like, it sounds pretty bad, but is that actually severe,” and like all that sort of stuff, yeah.
Joel wanted more information than his doctor could give him.
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Well my knowledge about severe asthma was very limited, because there was none out there and it was like, it was “OK, I’ve been diagnosed with this thing, but where can I get information?” There was no website. My Doctor knew very…a little bit, but not heaps.
I didn’t have much knowledge about severe asthma and I never knew before I did any research, what could cause it and whether it was dust or pollen or what could actually trigger it, till I did all the studies I’ve done, yeah. There was no website we could go to, to find out about it, until they set up Health Link now or whatever it’s called.
