People with severe asthma had messages for healthcare providers caring for people with severe asthma, as well as advice for others who were newly diagnosed with severe asthma.
People we talked to would like healthcare providers to treat the person with severe asthma as an individual, not label everyone the same, listen to them and be sincere in all dealings with the person. Having said that, some people with severe asthma were extremely happy with their healthcare providers. See also Interacting with healthcare providers.
Karen is very happy with her doctors.
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You know I am so fortunate here in [location] that we have a good hospital, and I have amazing doctors. And there is a research facility up here, so they’re doing amazing research into asthma. So we have great doctors, absolutely top-notch doctors. So I have been really fortunate in that. So yeah, to move elsewhere would be really scary.
People with severe asthma felt it was important for healthcare providers to get to know their patient well, not make assumptions or get lazy, such as being unfamiliar with the person’s history.
Logan would like to see better communication between services for children and adults
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Yeah more so. I feel like the last two years of paeds was probably the best because they sort of realised you’re going there for 12 years, they had a full understanding. And now that we’ve changed, none of the paperwork followed through. It was just like a whole new patient again. And I think what made it worse is because they moved from the paeds one to the new one.
People we interviewed wanted to feel that the doctor cares and is sympathetic, but at the same time is sincere in providing information. Some people with severe asthma prefer healthcare providers to tell them what they need to hear, rather than what they want to hear, but in doing so accept that the person may need some time to adjust. If a GP was uncertain of the diagnosis or best treatment approach, people we spoke to would like a timely referral to a specialist.
Shannon wants understanding, not “we know” how it is.
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Just be a bit more, lenient with people and more sympathetic and empathize
and all those kinds of things to understand of how we feel instead of telling us how we feel. They think they know on how we feel when they don’t know what we’ve gone through. So, yeah, they’d help that way.
Active listening is a learned skill for effective communication. It involves complete attention to what a person is saying, listening carefully while showing interest, and not interrupting. It requires awareness of the content, intent and feeling of the person speaking. People in this study first and foremost wanted healthcare providers to listen and pay attention to what patients were actually saying.
Joel would like more attentive listening by healthcare providers.
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I would give them the advice of, listen to the person or the patient that deals with it day in, day out more often and if they have advice for you, don’t just say “oh, you’re not…”. Some of them, not all, but some go “I’m the Doctor. You don’t know what you’re talking about”. “I do mate. I live with it every day”, so at least pay attention to the person, what the patient’s actually saying and actually learn off the patient more.
People with severe asthma appreciated healthcare providers explaining about medications fully as well as discussing lifestyle. Having something in writing or a plan to refer to was also valued by people in the study. Something visual such as a drawing was also useful for people with severe asthma when trying to understand certain concepts.
Michael believes lifestyle education is vital.
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The big thing for health professionals for me is actually, they’re explaining what’s going on for people with severe asthma, also, what is available for them in terms of medications, but also working with them in terms of lifestyle. Lifestyle is such an important issue in terms of severe asthma, because your lifestyle can influence the asthma you experience enormously, so it’s that combination of lifestyle medication and answering the questions, explaining to people what’s going on physically, as well as how can you deal with that, they’re the issues.
People we talked to spoke about how they wished to be treated—they wanted to be active participants in decisions about their treatment, not to be seen as ‘the disease’, or be talked down to, but rather be viewed as a client. People with severe asthma would like healthcare providers to be positive and supportive and not to judge people with severe asthma for their life choices or blame them for their situation.
Marion realises that patients do not behave perfectly, so messages may have to be repeated.
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I guess you have to accept that people won’t necessarily do what they’re told. And you may have to tell them to do the same thing several times before the message finally sinks in. And also maybe, I don’t know, maybe accept that we all make bad decisions, you know. And we’re allowed to, that’s life. You know, I eat more chocolate than I should. But, you know, that’s my choice. And so maybe they’ll come across people who just aren’t up to acknowledging that they’re in the place they are, and they will struggle with doing what they need to do to keep them healthy and you’ve just go to try and I think fight that compassion fatigue of, I’ve told you this and you won’t listen to me. I think you just have to accept that some people are going to go down that path and as a professional you just have to put on your little professional suit and say, OK, here we are again, let’s take it from the top. And this is what we need to do to get you better and this is what you need to do if you want to stop coming back here all the time.
Tony does not want to be talked down to.
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Yeah, I just think be more open and frank and just talk to the patients, and tell them everything. Don’t be sort of dictatorial… I’ll talk down to you. Talk to them on the same level, become like a friend if you can. Talk to them like a friend, rather than… you can be firm, tell them what to take, but don’t talk down and pretend that you’re better than them. That’s about all. Yeah.
Helen wants to feel a personal connection.
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I think for me, it’s all about, based on how I’ve been talking about my specialist, it’s about that connection, it’s about feeling like he’s talking with or asking questions of me, not a patient. It’s a personalized—it’s how to have a personalized connection and relationship with someone when you’re seeing them for the first time. Whether you are the care provider or the patient. For me, it’s so important, like I’ve said earlier, to feel heard and understood and not mocked, that’s not the word, it’s not the right word. Perhaps we as patients may not use the correct terminology or it might sound a little simplistic but we’re being serious, I’m certainly not there to just trying to get time off. Or it’s really important to just feel comfortable with the person and that they believe what I’m saying and that they believe that what I’m describing is the best way I can describe how I feel.
In respect of advice to people newly diagnosed with severe asthma, common ideas were to ask questions and educate yourself, stay on top of things and don’t panic. People we interviewed felt that those newly diagnosed with severe asthma need to take a positive view and treat their condition seriously, but at the same time not dwell on it. Feelings of fear are to be expected and normal.
Michael suggests educating yourself about the condition.
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There’s an element of fear, not knowing what impact it will have on your life. It’s actually reassuring that person that asthma is not a death sentence, it’s not going to have a major impact on your life, provided you acknowledge it’s there, what can I do about it and find out what are the triggers, what can you do in your own life that will support the lifestyle you want to have, including asthma. That means support from the people around that individual as well, not just the medical profession. Their families, partners, finding the right balance for them in terms of living a full life with asthma.
People in this study stressed the importance of having a management plan and using that to stay on top of the asthma. The advice was to stick with the plan, don’t self-diagnose, listen to the experts, learn to understand your body and its limits, take the necessary medication, seek the best treatment you can afford and finally seek a second opinion if you need to. They said it is important to acknowledge that it will be a long road and things will change along the way, so people should be prepared to incorporate the changes. As Justin says, it’s not the life sentence you think it is. You can have it for life, but it doesn’t have to be your life.
Denise advises listening both to your doctor and your own body.
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I would say listen to your doctor. Listen to what he tells you and go with your heart. Your heart tells you the right way to go. And if at first you don’t succeed doing it your way, go to your doctor and listen to what he tells you, because he does know what he’s talking about. He’s spent years training. So I would say just listen to your body. And get the full training from your doctor. So that’s about all I can say.
Newly diagnosed people with severe asthma shouldn’t try to do it all themselves but seek support from family and friends and keep them in the loop. People we talked to would encourage people to voice their feelings and take the opportunity to talk to counsellors or asthma educators, as their perspective is very different to doctors.
Frank found counsellors can advise about daily living.
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Because a lot of people don’t know how to cope with it when they first get it. They don’t know how to handle it, who to talk to, how to go about it. Yes your doctor can talk to you but he’ll talk to you in a medical sense. I’m talking to a counsellor who can tell you what’s good for you and your family, if you’re not certain. I’ve spoken to them on numerous occasions. Carpets, the light fittings, heating, areas to go and visit. Made my life easy.
Marg likes to verbalise her needs in order to create awareness
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The first thing I have to do is put it out there, because I’ve often wanted to do a lot of things and I think when I voice it, when I say something, when I say something I’ve then created it. ‘I want to do something about asthma, I want to do it, what can I do?’ So I’m putting it out there, putting to whatever, to God, to the universe, but I say ‘well put it out there’. And then I think if I’m sincere when I say it then something then I will notice what comes up to do. It’s about awareness, I will notice, like somewhere you’ll see ‘oh my goodness there’s something about asthma’ or ‘aha that’s what I heard yesterday’ and I think that’s where we avail ourselves to information and we do something about it.
