Advice for healthcare providers and Messages for others with severe asthma

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.

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

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.

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.

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.

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.

Tony does not want to be talked down to.

Helen wants to feel a personal connection.

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.

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.

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.

Marg likes to verbalise her needs in order to create awareness