Boston Children’s Hospital’s Community Asthma Initiative

We started our Community Asthma Initiative about a year and a half ago. We provide kids we’ve identified with a nurse who does some case management and connects them to their primary care provider, arranges for a home visit with an asthma educator who both educates the family about the asthma and also goes through the house with them and helps to point out and help them remove triggers. The nurse helps families understand the disease so they can manage it better. I think it’s really important to make sure families know that they have access to those kinds of things. When you feel like you’re there by yourself and you have to deal with the whole thing alone, your tendency is to throw your hands up and think there’s nothing you can do about it, but when you realize that there are supports, there are lots of people out there to help, then I think that makes a big difference.

Shari Nethersole, MD, Pediatrician


We work with families whose children are coming to our Emergency Room or have being admitted to the hospital for asthma. The goal of the Community Asthma Initiative is that children have “good asthma control”– that means that they can play, sleep and attend school like other kids. We try to support and empower families through a comprehensive approach, providing asthma education, but also working with families to identify possible barriers to good asthma control, such as lack of an Asthma Action Plan, lack of insurance or money for co pays, or housing with pests or other environmental triggers.

Susan Sommer, RNC, NP, Community Asthma Initiative


The ones who are in the middle can be the most at-risk
The poverty issue is a big one for families who have asthma.If they are very poor, MassHealth can cover their prescriptions, but for the people who are working but don’t qualify for MassHealth and are in that in between range, the co pays for some of these asthma medicines are really high. You can easily spend a hundred and fifty bucks a month if you’re on three different medicines for your inhalers and whatever other medicines you’re taking for co pays.   That’s the group that I sometimes worry about the most in terms of just actually getting the medicines and being able to use them on a regular basis.

Shari Nethersole, MD, Pediatrician

 

We try to empower people
If you work with families who have greater risk factors, like being single parents, living in higher levels of poverty, higher levels of disease prevalence, violence concerns, difficulties with access to school programs and education, and then you toss into the mix, “Ok, now your child has this chronic problem and they need to take medicine every day,” it can just be overwhelming.   It already  is  overwhelming if you’re poor and you’re trying to get your kid educated and trying to make sure you have enough food for the family to throw in one more thing you have to do. In some ways forces families to be very organized and on top of things to be able to manage it well, but it certainly can be done. I think one of the things we are trying to do is to really empower people to say, “OK, this is something that’s a challenge, but we as the family can handle it.”

Shari Nethersole, MD, Pediatrician

 

The home visit
We tailor the home visit to the individual family’s needs. One of the best parts about a home visit is that we can take as much time as we need, so families don’t feel rushed and have time to ask lots of questions and really express their concerns. It’s a luxury that providers in the clinic don’t have. We usually do like to start with a review of what asthma is and how the medications work. Even parents and children who have been dealing with asthma for a very long time have forgotten a lot of the “asthma basics.” The Asthma Action Plan makes a lot more sense, when people know what each medication does and doesn’t do.

We also spend a lot of time on asthma triggers and we do an environmental assessment of the home, so that we can both educate and assist the family in reducing or eliminating potential triggers, such as pests, carpeting (that harbors allergens), mold, tobacco smoke or strong cleaning products. We do provide special dust mite proof mattress and pillow covers, non toxic materials to help control pests, and even a vacuum with a special filter (HEPA) that picks up the tiny dust particles that are inhaled and often trigger asthma. And it’s all free to patients!

Susan Sommer, RNC, NP, Community Asthma Initiative

 

Working on many issues
I’ve really worked with families from the inner city my whole career, so I have an appreciation for how overwhelming families’ lives can be and how few resources they have. Most families I work with have incomes well below $25,000 a year, so they are constantly juggling competing needs. It’s not an option to just pick up and look for a pest free apartment or buy a new leather couch that won’t harbor dust mites. I really try to touch base with families often and over time we work on the many issues they have to deal with.

Susan Sommer, RNC, NP, Community Asthma Initiative

 

We’re always learning how best to communicate
We’re always learning, both personally and institutionally, how best to communicate with our constituency which, for the Community Asthma Initiatives, are the children with asthma and their families living in Boston’s urban core. There’s a misconception that we go charging into the community saying “We’re from Children’s Hospital and this is what  we think you should be doing.” That is not my philosophy, nor is it the philosophy of the hospital. It’s “Hi, I’m Amy from Boston Children’s Hospital– what can I do to help you?” If you ask that question, you will, more often than not, get a sensible answer that establishes a starting point for assisting these kids and their families.

Amy Burack, RN, MA, AE C, Former Community Asthma Programs Manager

 

Recognizing cultural influences
We serve a community that is both linguistically and culturally very diverse. When it comes to health care, culturally influenced remedies continue to play a significant role and we need to do a better job of asking families about them and really listening. Some countries swear by a particular kind of tea that is brewed to off set respiratory problems. When patients ask me “Would it be ok if I have the tea?” I respond by saying “I don’t have any problem with you drinking the tea if it makes you feel better, but I wouldalso  like you to try x, y, and z along with it.” Patients seem pleased with the compromise. I think you get a lot further by recognizing the cultural influences in people’s lives and working with them, and to me, it is a fascinating learning experience.

Amy Burack, RN, MA, AE C, Former Community Asthma Programs Manager

 

Heat or eat
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