- Parents are an important part of their child’s asthma team. But for some, speaking up can be intimidating. Join pediatric nurse practitioner Jodie Stabinski as she talks with Peggy, the parent of a 9-year-old child with asthma, to discuss ways parents can actively partner with healthcare providers to support and empower their child.You can also download the podcast via PodBean, Apple or Google Play for listening anytime, anywhere.This podcast is sponsored by Allergy & Asthma Network in support of the U.S. Centers for Disease Control and Prevention (CDC) EXHALE technical package. The goal of the EXHALE technical package is to help people – especially children – control asthma and reduce emergency room visits.In this Episode…
- 2:22 – What is important to know about caring for a child with asthma?
- 4:26 – How to help a child take medications every day
- 7:20 – Partnering with a provider on whether a treatment plan is working
- 8:50 – Working with a child on taking asthma medications
- 11:06 – Feeling comfortable communicating with providers
- 14:30 – Ensuring follow-through to the treatment play – and why it’s okay if you’re not perfect
- 17:52 – Advice for parents who may be hesitant about collaborating with a healthcare team
The following is an edited transcript of the Kids Breathe Better podcast episode 1: “Parents & Patients as Partners”
Thasia: Hello and welcome to Kids Breathe Better, a podcast series designed to give parents and caregivers helpful tips and strategies to maintain their child’s asthma symptoms. Please welcome our host, Jodie Stabinski. A pediatric nurse practitioner, she has over 35 years of experience working with kids with asthma and other pulmonary concerns at the outpatient clinic at Penn State Hershey Children’s Hospital. She also is a pediatrics instructor for the Family Nurse Practitioner Program and educates professional groups on a national level. Today, Jodie will discuss childhood asthma and how parents and patients can partner with healthcare professionals for better care. This podcast episode is designed for educational purposes only and is not intended as medical advice. Thanks for joining us today. Now we’ll turn it over to Jodie.
Jodie: Hi, everybody. For today’s discussion, I have Peggy, mom of a 9-year-old daughter with asthma.
Peggy: Hi, thank you for having me.
Jodie: You’re welcome, and thanks for coming. We’re going to talk about parents and caregivers and how they are partnered with providers such as myself. My name is Jodie, and we’re going to talk about pediatric asthma and how partnering with your provider can help not only keep them out of the hospital in emergency rooms, but also keep them breathing well and living an active life.
So, I’m going to give some background. My daughter is now 9 and a half and she has asthma and she is actually extremely active. She has moderate persistent asthma and she’s on a daily controller. And she does have triggers that happen, and some of it is allergy-related, some of it can be emotional, and some of it actually is illness-related, such as a viral cold or any of those lovely germs that are out there that make us sick, breathing-wise.
So, Peggy, you and I have known each other for a while, and I’m your child’s healthcare provider in her asthma care and we try to control her as best as we can. You have done a great job in caring for her at home. So what would you say is important as we, as a team, work with your daughter because now she’s older and she has no qualms about telling us how she’s feeling. She wants to be active.
So what would you say are some important things for the team to remember when we care for your daughter, or when we care for any child with asthma?
Peggy: Well, first of all, she wants to do everything everybody else does. And she doesn’t want people to even know that she has asthma truthfully. She doesn’t want to be seen with her inhalers. She doesn’t want to have to stop and take her inhaler. So it’s vital that she takes her meds as prescribed and we rely on the whole team to get her through.
Jodie: What do you do? I know when she comes to see me, we talk together and I talk directly to her to explain to her why it’s important. We did have an episode where – not every child, but some go through this, especially as they get closer to the preteen years – they don’t want to be individualized as knowing that they have to carry around something that they have to use in order to be able to be as active as they can be. So they get really self-conscious.
I know she was not wanting to take her meds for a little bit, and we did talk together as part of the team. She is the direct person that this affects, but she also has to be able to put some input into this and have a little bit of control. So we talk about her medications. Is it hard for her sometimes to have to take her meds every day?
Peggy: Yes. She’s not able to swallow pills yet. We’ve practiced and practiced, but she still can’t swallow a pill. So we have a routine where in the morning she takes her [medications] with yogurt. She takes her allergy medicine – that’s a liquid, so that’s no problem. When it’s morning, it’s fine. She’ll have breakfast. She has her little routine. She goes off to school.
Jodie: And do you watch her take her inhalers?
Jodie: Because a lot of people I know, they’re busy. It’s really important for us as a provider to find out if we are still having a good technique in properly using those inhalers. So that’s a good thing.
Peggy: Yes. And when we’re here, Dana – who’s a respiratory therapist, she’s a big part of our team – makes sure that she’s doing it right. She’ll check, and she shows her that she’s doing it right. And she’s also moved up from the yellow mask spacer to the mouthpiece. And I think that makes her feel a little better. But she’s still not ready just to use the inhaler itself.
Jodie: So you never want to do that. You will want to use a spacer always.
Peggy: But the blue [inhaler] makes her feel a little better than the yellow. But yes, in the morning, we have our routine. Everything’s sitting out on the island, and I’m right there with her. Now, at nighttime, she’s very active, as you said. She’s cheerleading, field hockey, piano, violin, constantly on the go, basketball, gymnastics. So we carry our spacers with us everywhere we go. I have them downstairs. I have them upstairs. In her bedroom. I have them in the car. I also have her nebulizer machines within reach at all times.
Jodie: And she has two rescue inhalers that she can use. She does two different ones. And we have talked through the years what they’re used for. And then we create a plan that I write down for you – probably not in the best handwriting, but you get it. And then there’s the Asthma Action Plan that goes to school, that every child who goes to school should have.
So do you find it helpful, especially when things are not working well, that you are the mom and you are the advocate, and you call me, as the provider and say, ‘Hey, this is not working’?
Peggy: I do.
Jodie: It’s helpful, though, to have a written plan.
Jodie: I don’t want to put words in your mouth, but do you feel comfortable enough to say, ‘Hey, this is not working?’
Peggy: Yes. Oh, definitely. Because the last thing I want her to do is struggle. And there’s nothing more concerning when your child can’t breathe. I mean, it’s devastating to watch and to listen to. It just feels like it goes on forever.
Jodie: And we as providers need to be open to that. What I say – and it’s been a long time since you first met me, but I tell parents or caretakers or whoever is in that role – that we’re a team. I can put some of the medical pieces together, assess them, and do all that good stuff. But you as the mom or the primary caretaker, or the dad, is the expert in your children. So you see what goes on, you see what works, you see what doesn’t work. And it’s really important to approach the provider and say, ‘Hey, this isn’t working. We need to do something different. Or can you speak to her and explain why this is important?’
Peggy: Exactly. So with the nighttime meds, she takes her inhaler, she takes her [medication], and she also has her nasal spray. So all of that is sitting up on her dresser, where her nighttime routine is to take that. Now, there are times when she’s thoroughly exhausted, gets her shower and just looks at me like, if you bring it even over here, you’re in trouble. But we do, we talk about it.
And we say, ‘Now Jodie prescribed this, you know that you need it, your lungs need it.’ And she’s like, ‘I don’t feel like taking it.’ But she knows she needs it. And sometimes it’s a fight, I’m not going to lie, because she’s 9 and a half. She’s exhausted. So I’ll start with, ‘Well you lay down and I’ll just give you the inhaler.’ And then she’ll just take it. But she’s not happy about taking the pill, because she’ll have to go get yogurt and do all that. But she does. Now, does she get that night time? Every single night? There are some misses. I’m not going to tell you any different.
Peggy: Once in a blue moon, once or twice, she will miss. On vacation we pack it all up. She knows what to pack. And we also take her nebulizer machine, because in my opinion, when she’s struggling like that and she’s gasping for air, that’s my go-to, because I feel that that works exceedingly well in that time frame.
Peggy: Great. And it’s been successful?
Peggy: Oh, it’s very successful. And it’s easy, it’s quick, it’s fast. And I hand that to her and it’s just to me, it’s the quick fix. Right away. It’s my go-to. And I have one nebulizer machine downstairs, and I have one in her bedroom.
Jodie: Great. So do you feel that you have providers that you didn’t feel comfortable talking to or they weren’t receptive to suggestions, or anything like that? Because you’re pretty good about advocating for her.
Peggy: Never with you or the clinic or any of her nurses. Everybody works so well as a team. They really do. They know her and she’s comfortable with them. Like, she will leave and go with Dana, the respiratory therapist, to do her pulmonary function study, and she doesn’t hesitate. And she knows we’re coming to see you, and that’s fine. So this is basically part of her routine. She knows since she was little – you had her at, what, 3 months old, maybe? So this is just part of her routine. She knows that she needs to come here. She knows she needs her meds.
Jodie: She knows how it is not to breathe well.
Peggy: She does. Yeah. And it’s concerning, and it’s scary for her. And you even set us up with the speech therapist. And we went there for those appointments. We had two appointments and we did two telemedicine appointments. They gave her some suggestions on when she feels like she’s having an asthma attack to do different breathing techniques. We tried, we weren’t successful. But it’s out there. You always have the newest, the latest, the best things to offer her, and we appreciate that because it’s scary – it really is – when you see them gasping like that.
Jodie: And I think, too, it’s really important for them to make the decision, knowing what it’s like without taking care of themselves and knowing how these meds can make a difference. And everything that we give to children doesn’t work all the time for everybody. It’s not just a recipe. ‘Here you go.’ We might have to fine-tune things.
Peggy: Yes. Because she switched to the Symbicort® that I believe made a difference. Now, as she gets older, I expect that things will be different, too. But she takes the Symbicort – it’s nice. She takes that, and cleans her mouth. The other thing is, you always know when she needs a steroid, which doesn’t happen often. But when she’s in extreme distress and we get her in here, thank God for the team and we can get in contact with you.
Jodie: Well, we’ve had some very strange viruses out there these days. A lot of things are going on, people are getting sick. But I want to go back to what you said about … I say, this is how I explain it, life happens. Nobody’s perfect. Everybody is living their lives. And if we try for the most part to get these meds in and some people get really tired by the end of the day, so take them a little earlier. But I think it’s good that it’s okay once in a while that you just aren’t perfect, and that’s okay.
I say people ask a child or ask a teenager, do you think you’re about 50% adherence to these meds, again, depending on where they’re at? Well, let’s add 10% or let’s go to 80%. But I never say 100% because life happens, and then you’re stressing out about that, and it’s like, ‘No, you just need to do it and get as much as you can.’ And it really has done, I think, wonders for her. I mean, she’s active.
Peggy: She’s very active. And there’s times when she’s out on the field, she will come to the car and she’s like, ‘My inhaler.’ I mean, I know when she comes back to me because I never leave her, never. She’ll come to me, and I know exactly what she needs. She’ll take her inhaler, she’ll get some water, and she’ll go right back to the field. Gymnastics, the same way. And so I will carry them, but I’ll carry them in here so people don’t see them. Because I respect the fact that she has this, and she was born so early, as you know. But I also respect that she doesn’t need everybody to know her story, and she will tell you that.
Jodie: And you respect that. And that’s being respectful of the team member.
Jodie: For lack of a better description, yes, she’s a child, yes, she’s a patient, but she’s the reason we’re doing this.
Peggy: Exactly. And she’s shy. She doesn’t want everybody to know that she needs these meds. And we do. We carry the three of them. But she’ll come to me when she needs me, and she will get her inhaler, and then she runs back to the field. She has her meds. She comes to me, she gets them. And what can I say? She just doesn’t want people to know that I know.
Jodie: But for the most part, she doesn’t need her rescue medication usually, right?
Peggy: Not usually, but like I said, we have everything on standby. The thing that I applaud her the most for is that she’s had so much education here with the team that she knows when she’s in trouble. And the fact of the matter is, when she’s in school, she knows, and she knows how to get right to that nurse and what to do. So, I mean, that speaks volumes for the team, for you, for everybody, because she’s educated on it. And it’s not the fact that, ‘Okay, I have this, and I’d rather not stand out here and not be able to breathe,’ but she goes right to it.
Jodie: For those people listening that are really struggling to want to be the advocate, or want to be part of the team and are fearful – because sometimes when people walk into a doctor’s office or a provider’s office, they clam up, especially if the people aren’t welcoming. But for the most part, I think we’ve learned as providers that we are a team and we have to respect parents’ input. What would you say to those parents that are a little hesitant, to give them some confidence and to be an active and vocal team person?
Peggy: Well, first of all, it’s your child. You want the best for your child, and asthma is not something you want to play with. I mean, it’s a very serious thing, but it’s your child, so you would want to give as much information as you can and advocate for them. I understand you might be concerned that you don’t have the medical knowledge or the medical terminology, or you might feel intimidated with the white coat or whatever, but just basic communication. Tell them, ‘Make a chart, write down what happens, how many times they’re having their asthma attacks and where you are, is it outside? Could it be related to allergies or whatever? What brings it on?’ You don’t have to be perfect, you don’t have to know medicine, you don’t have to be proficient with terminology, but just be aware. Know your child as you do, and just relax and work with the team and be a big part of the team. It’ll all come together. It really will.
Jodie: That’s great insight. I appreciate that, Peggy. Well, thank you. I’m going to wrap it up. It went quickly! I hope all of you that are listening got some good information out there that makes a difference and your child does breathe easier.
Thasia: Thank you for listening to Kids Breathe Better. This episode was brought to you by Allergy & Asthma Network in support of the U.S. Centers for Disease Control and Prevention EXHALE technical package to control asthma and reduce emergency room visits. Our next episode will discuss practical tips and strategies to care for your child with asthma. If this episode was helpful to you, please subscribe and leave a review. For more information, visit our website at AllergyAsthmaNetwork.org.
About Kids Breathe Better:
This podcast series is brought to you by Allergy & Asthma Network in support of the U.S. Centers for Disease Control and Prevention EXHALE technical package to control asthma and reduce emergency room visits.