From airway clearance to inhalation therapy and exercise, physiotherapy plays an important role in managing CF. But just what can a physio do to support you and how can you get the most out of working with your physio?
Jen Hauser is the president of CFPhysio.com, an educational resource designed to make CF physio education accessible to all. Jen has more than 20 years’ experience working as a CF physiotherapist. She believes the role of a physio is all about helping you to build a toolbox so that you can effectively manage your CF.
“We’re here to develop people’s toolbox, so that they can become that skilled craftsperson in optimising their health outcomes and what works best for them. At the end of the day, that’s what our role is. It’s to help you have the confidence to self-manage with the support of your care team.
“You’re juggling managing a chronic health condition, along with trying to live the best version of your life. I think as physios, that’s where we need to come in and say, well, how can we support you to live that best version of your life? What’s going to work for you? Let’s have an open conversation about what your options are.”
We caught up with Jen to learn more about how physiotherapy can support people with CF and what her advice is for making the most of physio.
”I think physio can play an integral role in helping you to feel confident and empowered to manage your own health.Jen, CFPhysio.com
What does a CF physiotherapist do?
A physiotherapist, by definition, is someone who assesses the function of the human body and whether it’s not working optimally and whether that’s due to disease, injury or just long-term changes. Our role is to support and guide you to find the way to function as best you can. Whether that involves rehabilitating from an injury or supporting you to learn how to make the most of your condition so that you can modify your treatments as you need to when things change in your life.
Because CF is so complex, and it is multi system, CF physiotherapists have quite an extensive role. The immediate thought is the lungs where we work on optimising inhalation therapies and airway clearance techniques to help your lungs stay in the best shape possible for you.
There is exercise and musculoskeletal therapy. So, we can have an influence there, whether that be through massage therapy, mobilisations, home exercise programs or postural advice. Then there’s also urinary stress incontinence, the sinuses and reflux, we can be looking at how we can support you to improve those too, working together with your medical team and sometimes other specialist physiotherapists.
What support can a physiotherapist offer someone living with CF?
The first thing we can do as a physio is connect with you. Develop a rapport, and find out what things are most important for you. What is your definition of quality of life, and how is life working for you? When life is good for you what does that look like?
We have the skills and knowledge as physiotherapists to talk to you about the various options you have. Whether that’s a device or a technique that can help your airways and we can guide you with that equipment, teach you how to use it, evaluate whether you’re using it correctly, and whether it’s working for you. If you don’t like the device, or how the treatment works for you, it makes it really hard to stick with it long term. So, we’ve got to create a really open safe space that’s non-judgmental, so we can work together and find out what the best routine is for your airways, but also your life. We can treat the airways, but we’ve got to look at the whole picture.
The other thing is helping you understand the disease process. But in a way that works for you. We can help you understand the science, but we need to help you develop your skills. We often refer to our toolbox as physios where you can have a whole stream of different techniques and options to use day-to-day or within the same day that will help your quality of life and help your symptoms.
It’s about getting you to become a master craftperson. I often tell my patients that there is science, obviously it is a health condition, but for them to manage it, it’s an art form. And it’s for them to be able to master that and feel confident in understanding how their body’s working. I think physio can play an integral role in helping you to feel confident and empowered to manage your own health.
”The first thing we can do as a physio is connect with you, develop a rapport, and find out what things are most important for you. What is your definition of quality of life, and how is life working for you? When life is good for you what does that look like?Jen, CFPhysio.com
When it comes to physio, what do you think the key goals are?
Primarily it is quality of life and reduction of symptom burden. For physio, if we’re looking at the lungs, it might be to be trying to reduce that sputum load, manage secretions, improve exercise tolerance, improve ease of breathing. These are just some examples.
Physio treatment will often feel like a burden, a chore. There may not be immediate positive feedback from a session so it can be hard to stay motivated to do it. We want to make it as effortless as possible, but as effective as possible. You should never feel totally exhausted and awful after you’ve done your physio sessions. Whether that’s airway clearance inhalation, or exercise therapy, or a combination of all. We can try to see whether you can combine different treatments, and how you can best integrate them into other things you are doing in your week, creating sustainable and beneficial habits for your health.
There are other goals of physiotherapy and that’s going to be different across the board. CF is such a unique condition, and every individual has a very unique journey. Our key goal is focusing on maintaining or improving those health outcomes that we know physiotherapy techniques can have an influence on.
When you think about the work that you do as a physio, what are some of the recurring themes that you notice?
The biggest thing is that the treatment is a burden. That you do all of this treatment, and sometimes either you don’t actually feel much different immediately afterwards, or it’s interfering with other things that you would prefer to be doing. Sometimes there’s no immediate gratification for doing airway clearance and that can be extremely frustrating. So, trying to establish good long term habits and the difficulty of seeing the point of treatment when there’s no immediate positive effect is something that comes up a lot.
As physios, we have to be able to understand the complexity of the disease, that it’s actually very much beyond just what is happening in the body. We need to respect the mental health side of CF. The complexities of accepting and understanding living with a chronic disease, and where someone is in that journey. Understanding the person as a whole not just as a set of lungs, or numbers, or the need for us to get our assessments done. Particularly at times when people are feeling physically unwell or fatigued it can be really difficult to have the energy and drive to do what you need to, even when you want to do it and know that it works for you.
”We have a lot to do with patients with CF, we do spend a lot of time with them and get to know them. And so, we can play a role as an advocate for them. We can help them have a voice if they don't have that confidence or help support them to develop that confidence as well.Jen, CFPhysio.com
What tips or advice would you have for someone to get the most out of working with their physiotherapist?
I think honesty, definitely. And I think that’s a two-way street which starts with physio needing to create a relaxed, safe and non-judgmental environment for that. But honesty absolutely. Because then the physio can talk together with you to find out what’s working. If you’re just saying what you think the physio wants you to hear, it’s going to be much harder for everyone to find the best outcome for you.
CF clinics are multidisciplinary clinics, and so you might see quite a number of healthcare professionals in that session, and it can become quite overwhelming with the amount of information that you get. That’s why I think it’s always really helpful spending some time before you go and see the physio identifying your three top priorities that you would like the physio to focus on. If you turn up to clinic or your physio appointment, and can identify those priorities straight up, that can make that appointment hugely beneficial.
Also, when things feel like they are changing, write that down. CF is so uniquely different for everyone and it’s sometimes hard to recall changes that have occurred before you actually see the physio. And also, individuals can become so accommodating of their symptoms, that they almost don’t notice how much impact a symptom is having because they have it every day. If you come to your appointment with that information, then that’s helpful.
There is value in some form of monitoring your symptoms. The symptoms that are important to you, and that are impacting you, and you want improved. Even if it isn’t every day, but maybe when you have noticed change, preparing for an event, or trialing a new technique, or for the week leading up to clinic. It might not be specific symptoms like sputum volume, or breathlessness, but it might be things like, could you keep up with your mates on the basketball court? Had this suddenly or gradually changed? Have you noticed that every time you go to bed you seem to get a tickle in your throat? Or is it that you used to be able to sing in the car really loudly but now you are coughing at the chorus?
But I think also checking in with your physio at the end of the session saying you just gave me way too much information, can you write it down for me? Or can you send it to me in an email? Or can we have a phone call follow up?
What would you like someone with CF to know about physiotherapy?
We are beyond the lungs; I think that’s probably what I’d want people with CF to understand. So don’t be afraid to share any symptoms with your physio. Because it might actually be that that symptom is something physio can address, and they can improve. We can help with airway clearance, inhalation therapy, exercise therapy, postural advice, urinary stress incontinence, sinus issues. We may not be able to directly treat all of these on our own, but we can refer you to other specialists who can.
We can offer more than just airway clearance techniques and devices. We are very passionate about inhalation therapy and that codependent relationship. If we get inhalation therapy right, we improve airway clearance. If we do airway clearance well, we optimize inhalation therapy. And exercise and musculoskeletal issues continue to be an evolving area, in the new CFTR modulator era, it’s going to continue to be a really big area of focus.
And also, advocacy. We have a lot to do with patients with CF, we do spend a lot of time with them and get to know them. And so, we can play a role as an advocate for them. We can help them have a voice if they don’t have that confidence or help support them to develop that confidence as well.
CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more.
This story was published in June 2022. If you would like to share your story, please contact us at firstname.lastname@example.org. We’d love to hear from you and so would our listeners.