Same things over and over again
It’s important to say the same things over and over and over again. As providers, we explain things and think we’ve explained them well, and that the families should get it– but it doesn’t often work that way! Often we need to give lots of education about lots of other things, and need to work with families to figure out their own model for understanding what asthma is. You have to really go over explanations again, and again, and again, and again– it takes that long for people to really understand what it is they want to do. But then when they get it, they really get it. I think that it’s important to know that it’s fine to go over the same information and to repeat it.
Shari Nethersole, MD, Pediatrician
Recognize differences
I think we are finally starting to recognize the importance culture plays in illnesses. In certain cultures there are people who are reluctant to take any medicines, and there may be others who are very receptive and will take medicines every day and come back to each follow up appointment. We at least need to recognize that there are differences in how illness is viewed by individuals with different backgrounds and be aware that these factors will influence how treatments should be recommended. People don’t necessarily have to do it one specific way.
Frank Twarog, MD, PhD, Allergist
Cultural differences
It’s important to remember that other cultures can think differently than Americans about diseases and what the disease process is… There can definitely be some resistance to Western approaches to managing asthma. So I try to be respectful of those beliefs when explaining my Western approach to treating asthma.
Shari Nethersole, MD, Pediatrician
Asthma shouldn’t limit kids
The good news is that for the majority of patients, the right combination of medicines can get asthma under control. Patients with asthma shouldn’t feel, nor should their parents feel, like they’re going to be limited -they can walk to school, they can participate in physical education class and in other exercise opportunities. If medicines aren’t being well tolerated they should be in constant communication with us so that we can turn all the knobs up on the various medicines to get them to a point where the child can tolerate them. So the goal for us as physicians right now is to make our patients realize that yes, they have asthma, but that they can control it and that having asthma shouldn’t affect their lifestyle.
Hans Oettgen, MD, PhD, Associate Chief, Division of Immunology
The disease shouldn’t define the child
I don’t like to hear people call children who have asthma “asthmatics.” I treat children who have asthma – it should be “Charlie has asthma,” not “The asthmatic Charlie.” The disease shouldn’t define the child.
Frank Twarog, MD, PhD, Allergist
It’s treatable
I think that even though asthma can be a very frustrating disease to have, it’s treatable, and there are new treatments coming down the pipeline. We know enough about it so that kids who have asthma can have a good quality of life. I don’t think that an asthma diagnosis is a dark diagnosis that people need to feel really discouraged about.
Joanne Cox, MD, Associate Chief, Division of General Pediatrics
Kids with asthma can do whatever they want
I tell kids with asthma that if their asthma is under good control, they should be able to do whatever they want to. I have three goals for all kids with asthma:
1) I want them to be able to sleep through the night;
2) I want them to not have to miss school, and Mom and Dad to not have to miss work;
3) I want them to be able to play what they want to play.
If (when they are not sick or have a cough or cold) they are short of breath on a daily basis and need their quick reliever medicine more than two times a week, then their asthma is not under good control. They need to talk to their provider, or maybe see a specialist, and see what they can do to be on the right medication regiment so that they can sleep, learn, and play without their asthma interfering.
Beth Klements, MS, APRN, BC, Asthma Clinical Nurse Specialist, Pediatric Nurse Practitioner
Shifting the understanding of medication
We need to shift families’ understandings of asthma medication so that they recognize that persistent asthma requires chronic medications, not just episodic medications. Parents should understand that asthma is not like taking a course of antibiotics for a strep throat or an ear infection, but instead requires that their child takes medicine(s) consistently, often year round. That can be a big shift in understanding for a lot of people. Persistent asthma is a chronic disease that can be controlled with medications, and adolescents and their families should be able to make immediate adjustments to their regimens in response to increased symptoms.
Elizabeth R. Woods, MD, MPH, Division of Adolescent/Young Adult Medicine
Speak about it
I always encourage families to ask for a written Asthma Action Plan every time they bring their kids in for a wellness visit and to make sure that a copy of that Plan goes to the child’s school nurse or day care provider. I also tell them to be sure to speak about their child’s asthma with whoever is watching over their kids– and make sure they have a copy of the asthma management plan, as well. Make sure that all relief medications and their related delivery devices– spacers, nebulizer and tubing– are readily available and their use understood by all who may have to administer medication when the child needs it. Encourage the children, their friends, and adults to speak about it. Asthma is not a disease of shame. Young children should be encouraged by their families and school staff to speak to their friends and other adults when they’re not feeling well and take immediate action. A lot of kids, and adults, too, say “I’ll tough it out,” and doing so creates worse problems. Talk about asthma– engage in conversation and always ask questions.
Amy Burack, RN, MA, AE C, Former Community Asthma Programs Manager
Removing the stigma
Nobody wants to stand out in a crowd, nobody wants to be different. But between 10 and 15 percent of kids in Boston have asthma, so it seems like everyone must have a friend or know somebody who has asthma. I think it’s important to try to remove the stigma and say, “I know this might be weird, but I have to take my inhaler before I do sports to make sure I’ll be able to breathe OK.” We do have to look at where the child is at developmentally to know how we can get through to him or her. But whether they’re 10, 13, or 15, we try to explain to them that we need to do this or that to make them feel better. I don’ t think there is any magic involved with that, and I think it’s always going to be a bigger issue for some kids than for others, regardless what age they are.
Beth Klements, MS, APRN, BC, Asthma Clinical Nurse Specialist, Pediatric Nurse Practitioner
The rule of twos
I would tell parents not to accept poor asthma control. Be an active partner in developing and refining your child’s Asthma Action Plan, and to make sure your child’s provider knows what’s working and what’s not working. Expect that your child with asthma will be able to be active and healthy and don’t settle for less. Learn the “Rule of Two’s” – if your child is regularly having asthma symptoms more than twice a week during the day, or more than twice a month at night, then his/her asthma is not well controlled.
Susan Sommer, RNC, NP, Community Asthma Initiative
Routine visits are just as important
I often find that parents minimize symptoms when they go to their child’s provider. If you ask, “How is your child’s asthma doing?” you’re most likely to hear that it’s fine, even if the child is actually coughing every other night and has missed 30 days of school this year. So I urge parents to treat a routine asthma visit is just as importantly as an urgent care visit so that we as clinicians can get a detailed history and adjust their Asthma Action Plan* if necessary.
Susan Sommer, RNC, NP, Community Asthma Initiative
Hygiene hypothesis
Why are we seeing so many kids with asthma now? There are many different theories–air pollution, indoor pollutants, mites, carpets. There is one theory called the hygiene hypothesis. It is speculated that because children have fewer infections their immune systems are directed toward allergy rather than fighting off infections. There is some evidence that children who grow up on farms, where there are animals, have fewer rates of allergies and asthma. It isn’t related to the fact that they are exposed to the allergenic part of the animals, but that they are exposed to certain bacteria which change their systems. It may be that if you have more exposure to certain kinds of bacteria you may have less chance of developing asthma and allergies. But we don’t know that. The bottom line is that there are probably many, many factors that contribute to the higher rates of asthma in children.
Frank Twarog, MD, PhD, Allergist
Full participation in life
I think that the important thing with asthma is that for the vast majority of people it’s not a life threatening condition. For the most part, our patients with asthma can fully participate in life, can go outside and enjoy it and minimize the number of doctor and Emergency Room visits. With proper treatment children can be symptom free. I’ve been in practice long enough to know that the frequency with which we see well managed patients going to the Emergency Room now versus 10 or 15 years ago is dramatically different. We have better medications and when they are properly used they can make a dramatic difference in the person’s life, whether the child is 12 months of age or 22 years of age. For the vast majority of people asthma can be treated well.
Frank Twarog, MD, PhD, Allergist