Seeking information

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.

Information allowed Marg to achieve a sense of acceptance of the condition.

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

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.

John G found that the staff at asthma clinics were useful.

Marion also got information through pulmonary rehabilitation.

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.

Joel wanted more information than his doctor could give him.