RECORDED Tue 19 Nov 2024
SUMMARY KEYWORDS
cystic fibrosis, genetic condition, lung infections, daily physiotherapy, hospital visits, new treatments, life expectancy, genetic counselor, cross infection, social distancing, invisible condition, school absences, treatment burden, financial assistance, individual learning plan
SPEAKERS
Stephanie Quattromani, Megan Gilmour
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation, dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool, Co-Founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Megan Gilmour 00:49
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys, despite complex health challenges.
Today on Live and Learn, we have Stephanie Quattromani. Stephanie is the Executive Manager Services, Policy and Research at CF together, an organisation working to support the needs of the cystic fibrosis community in Australia. She is a trained genetic counselor with qualifications in medical sciences and has worked in medical research and nonprofits in the USA and Australia. She is passionate about driving opportunities for new treatment options for chronic disease.
Welcome, Stephanie. We’re so excited to have you on live and learn today
Stephanie Quattromani 01:40
Thank you so much for having me. It’s great to be here.
Megan Gilmour 01:44
So, Stephanie, today, we’re here to talk about supporting school connections for students with complex medical or mental health conditions. So, let’s jump straight in tell us how cystic fibrosis impacts kids and why it’s something every Australian needs to know and care about.
Stephanie Quattromani 02:03
Yeah, absolutely. So cystic fibrosis, or CF for short, is the most common life shortening genetic condition in Australia, and actually one in about 25 people in Australia are carriers of CF. So, whilst it is a rare condition, it actually is a lot more common than what people think.
CF itself causes a thick and sticky mucus to build up in various organs throughout the body, and that includes the lung and the digestive system. And as a result, people with CF typically experience frequent lung infections, which, over time, leads to lung damage, trouble digesting and absorbing food and nutrients, among other symptoms.
So, the management of CF is quite time intensive, and for children, this can involve taking lots of medications, daily physiotherapy, daily airway clearance to really get rid of that mucus from the lungs, and frequent hospital visits and sometimes admissions.
Megan Gilmour 03:01
Wow, that is really something to care about. And thank you for that stat, because it does bring to the front of the conversation, that this is – while a rare disease – is much more common than we realise.
So many people probably assume things about cystic fibrosis. What’s the million dollar question you get from parents or loved ones when their child experiences – well cystic fibrosis you’re born with it, right- so, it’s an early diagnosis. So yes, what is that million-dollar question that you get from parents or loved ones when their child experiences cystic fibrosis?
Stephanie Quattromani 03:39
So typically, the first question that we get from parents or loved ones, whether it’s grandparents, aunts, uncles, the question is always, what does this mean for my child? You know, what does this mean for this child as they grow up? What is their life going to be like? And it’s actually a really difficult question to answer, because every child with CF presents differently, and so everyone will have very different responses and outcomes, and it’s quite difficult, to generalise what the typical childhood experience of CF is, because there is so much heterogeneity between kids.
So, for example, some people will just take their medications as prescribed, and they won’t actually have any hospital admissions for a very long time. Others might have had several hospital admissions from early in life and deal with really complex lung infections, and so we don’t have a crystal ball. And it’s really important, I think, for having these conversations, to understand that every child’s experience will be very different, and importantly, that their life will not be defined by this genetic condition.
Megan Gilmour 04:42
Amazing, and that last one is the answer that we get on all of these interviews, is that their life won’t be defined by the disease or the illness or the condition. And this is just super cool, because it’s going to lead beautifully into what we talk about today.
Stephanie Quattromani 05:04
It’s so important. It really is. And I think, you know, it’s a really challenging time when there’s a new diagnosis and everyone reacts differently. And so, what we hear from a lot of parents is that they don’t want to get swept up in that diagnosis. You know, the first thing that they want to recognise is that they have a new baby, they have a new addition to the family. And so, we always say, you know, congratulations, you’ve got your new child, your girl, your family has grown. And so, you know, we shouldn’t take away from that really beautiful experience.
Megan Gilmour 05:36
Yeah, that’s wonderful. And so, this leads into the next question, what’s the most important thing you want them to know?
Stephanie Quattromani 05:46
It’s around hope, and certainly for CF, we’ve seen really remarkable progress in the last few decades, and that’s as a result of new treatments and improvements in care. So, whilst in the early 2000s someone who was diagnosed with CF could expect to live until their late 30s, a child diagnosed today in 2024 has a median life expectancy of over 66 years of age.
So, we’ve had just really tremendous progress so far. And look and it’s not stopping. You know, there’s still research that’s happening. There’re always improvements in care. And so, we hope that that number will just continue to increase, and importantly, that quality of life will also increase for people as the years go on. So, it’s really a message of hope that we’re seeing now, and it’s important to get that across for people as well.
Megan Gilmour 06:37
Yes, that’s so important in the face of any diagnosis, isn’t it? And just to be able to have, to be able to demonstrate the advancements that are happening and that will speed up over time, as well as our medical technology advances, it’s that there’s cause for hope, for sure.
So, Stephanie, we’d love to know what brought you into the world of cystic fibrosis?
Stephanie Quattromani 07:07
Yeah, it’s a good question. So, I am trained as a genetic counselor. And genetic counselors are healthcare professionals that specialise in working with families with genetic conditions. And one of the first families that I saw when I was in training was a young family, and they had a loved one who had recently passed away from CF, and they were looking at starting their own family and going through that journey.
And it was an interaction that really stuck with me. You know, I still remember that interaction to date. And, you know, I describe my career path as one that’s not exactly straight, but it’s a bit of a windy road. So, I’ve gone from genetic counseling into medical research and now at CF Together, where I’m able to bring together all of those experiences that I’ve had and get to work really holistically in improving cystic fibrosis.
And that’s through support services for individuals and families. It’s by advocating for change. It’s improving care and supporting further research to find better treatments and hopefully one day a cure for CF. So, it’s safe to say that I love what we do. It’s an absolute honor.
Megan Gilmour 08:14
Yes, and we’re so happy to get to engage with you today, and it is part of your lived experience. While you don’t have CF, this is your professional life. You’re living it, and everything that you’re learning in terms of connecting with people day in and day out, is just building your knowledge and your contribution. So, we want to thank you for that and recognise that without people like you, we don’t get change.
So, look, knowing all that you know what’s, what is your biggest hope for kids with cystic fibrosis, for their families and loved ones, when navigating CF?
Stephanie Quattromani 08:57
I think when they’re navigating it, it’s, you know, it’s recognising that they’re not alone. And so, there’s just shy of about 4000 people in Australia living with CF. And a really unique challenge of CF is that, because of the risk of cross infection, which is where the bugs that might be in one person’s lungs could be accidentally transmitted to another person with CF, it means that people with CF can’t congregate together in person.
So, if you’ve seen the movie five feet apart. That’s exactly what it’s referring to. It’s the requirement for social distancing and really, not really seeing people with CF in the same physical setting, which is incredibly isolating.
So, you know, for children living with CF, who may not have the opportunity to interact with other kids their age with the same experience, that’s a real challenge, and so certainly, what my hope is that with online interactions and resources, things like podcasts, where people can share their stories, videos and so forth, we can really bridge that gap, so that people who are living their lives with CF can connect with others and share lived experiences in a way that really fosters that connection without jeopardising their health.
And I think in the era of technology, we’ve gotten a lot better at that in the past few years.
Megan Gilmour 10:15
Yeah, well, that’s a fact that I was not aware of, and kind of hurt my heart when I heard it. Because part of being in these circumstances is connecting with people with the shared lived experience, it’s really something that comes through in these conversations, too. And here we are hearing about a cohort of children who can’t do that on top of what they’re going through.
So, could you share with me, just so I understand this social distancing of people with CF from people with CF? Does that translate through to people with CF and individual members of the community as well?
Stephanie Quattromani 11:14
Yes, it’s a good question. So, cross infection relates to one person with CF, transmitting, accidentally, passing on those bugs, to another person with CF. And so that’s not quite the same as, say, just general members of the public who don’t have cystic fibrosis. There’re not the same risks that exist.
But in saying that, we do know that if someone with CF does have, is struggling with lung damage and their lung function is quite low, they might actually choose to stay socially isolated a little bit for a time where there is a lot of viruses in the community.
Things like COVID, for example, was quite challenging for our community, because they are quite vulnerable to those other types of respiratory infections and illnesses that might be present. And so, I suppose there is the cross infection with their peers, but there is also the risk of just general infections that exist in the community.
Megan Gilmour 12:13
Yeah, I can imagine then COVID would have been quite terrifying.
Stephanie Quattromani 12:17
It was. And I think that it was actually quite interesting, because a lot of the practices that everyone really adopted in COVID had actually been adopted by people with CF for a long time, so the social distancing and wearing masks and hand sanitiser, it was actually, it was quite scary for a lot of our community, but it was also, I suppose, less jarring in terms of the changes that were happening at a societal level, because they were used to managing that for quite some time.
Megan Gilmour 12:47
Yes, absolutely. Well, thanks for clarifying that. I’m always learning so much on in these conversations, and it does sort of point out that we carry with us misconceptions, assumptions, just biases about things that are not correct, and we have a lack of detailed knowledge about them.
So just to point out that that one single fact that you pointed out is so important for us to understand about these young people’s lives and how it must feel to be isolated from people who could actually understand in their own age categories as well.
Stephanie Quattromani 13:39
Absolutely, and, you know, thank goodness for social media and all of these types of things that have now been able to step in and fill the gap. You know, it’s not a complete replacement, but, you know, it’s important for us to be aware of it, because then there are things that we can potentially do to help that isolation for sure.
Megan Gilmour 13:56
Yes, and we’ll get into technology in a little bit. So, what are some of the common and perhaps frustrating public misconceptions about cystic fibrosis, and how have you seen this impact families?
Stephanie Quattromani 14:11
Definitely. What we see is that people with CF cough a lot, and that’s because coughing is a really important part of clearing out that mucus that exists in the lungs. It’s really normal, and actually often when people with CF exercise, we encourage them to do some coughing along with it to really help that airway clearance.
No, they’re not sick, it’s not contagious, it’s just part of living with CF. But that can be really challenging when the people around you don’t know that. And CF is an invisible condition you wouldn’t know just by looking at someone if they have CF unless they disclose that.
So, it can cause some embarrassment, especially for kids who are, say, learning to navigate it at school and, you know, with their peers. If they’re coughing a lot, it can sometimes take a great deal of educating those around them about how CF presents.
And of course, that’s relying on the fact, if people actually want to disclose that you know, people can be very different in terms of their level of comfort about people knowing and so that can be quite challenging, especially actually after the pandemic where you know someone sneezed and coughed for a while, and you look at that direction and went, ‘Oh, are they contagious’ But for CF it’s just coughing as part of the condition and living with that.
Megan Gilmour 15:27
Yeah, another critical fact to be aware of, and I wasn’t aware of that either. It’s just so good to have these conversations to make sure that we get this clarity and that, you know the places that children spend time in, like schools, for that information to be available and shared with peers.
But again, that super important factor about privacy and the willingness or not to share, and children, I’m thinking of teenagers here, might be deeply reluctant to share that, and rightfully so. This makes for some interesting times, I imagine, and we’ll get into that a little bit further along.
Stephanie Quattromani 16:16
Yeah, absolutely. And everyone’s, like you said, everyone is so different with what their preferences are. And you know, we’ve had some people who have approached us and said, I want to do a school presentation on CF, and, you know, I wanted to talk about it and fundraise at school.
Others, don’t want to make it a big part of their lives. You know, they deal enough with CF, and they’d like that to be separate to their social interactions at school. And both are completely reasonable and purely dependent on the person and how they feel about disclosing that.
Megan Gilmour 16:47
Yes, and it points out again, the differences between people and presentations of things. So, there’s the condition, the disease, and then there’s the individual, or individuals within that and how different that journey can be, and the, you know, the individual’s way of dealing with it as well can be vastly different. So how many Australian children and youth are living with cystic fibrosis right now?
Stephanie Quattromani 17:19
So, I went to the Australian CF data registry for this. And so there are 1586 children with CF who are living under the age of 18. So that’s from birth to 18. And so that actually counts for about 42% of the CF population in Australia.
And only in recent years have we seen that shift to more adults with CF in Australia than kids. So that really speaks to the increased life expectancies that we’re seeing, which is reflected in these data registries, which is fantastic.
Megan Gilmour 17:55
Yeah, that is that, and that will grow. It will. That’s going to be a trend in that data set. So, 1586. So, is there, is there a risk of delayed diagnosis, or are most cases of CF picked up early and easily?
Stephanie Quattromani 18:17
Yeah. Most diagnosis are picked up with newborn screening. And in Australia, we’ve been quite fortunate that we’ve had that in place since 1986, so quite a long time, and actually ahead of a lot of other countries across the world.
But in saying that, there were 13% of new diagnoses last year were actually done in adults over the age of 18, and so we certainly do have those late diagnoses, and that can be because of a variety of reasons. It could be people who were born overseas and have moved to Australia. It could be that people have opted out of testing, or it didn’t get done for whatever reason.
So, whilst the majority do happen at that really early newborn stage, we certainly do see other age groups who will receive a new diagnosis of CF later in life.
Megan Gilmour 19:07
More information for me wasn’t aware of. What kind of complications do children with cystic fibrosis face?
Stephanie Quattromani 19:17
So, we’ve talked about the cough. I suppose the thing that really relates to that is the risk of lung infections, which we’ve also discussed, the risk of bugs. And often those lung infections need to be treated with antibiotics, often IV antibiotics, which are done in hospital. They can be very tricky to clear out.
Sometimes people will have multiple courses of antibiotics to get rid of those lung infections. And over time, those do cause damage to the lungs and can lead to lung failure. And so, we do see lung transplants being explored for people with CF when they do get to that point.
We also see digestive symptoms, so that’s things like difficulty gaining weight. And that’s because people with CF often don’t produce a pancreatic enzyme, which is used to absorb food, and so the nutrients from food makes it unable to do that makes it really difficult to gain weight. But also, just the increased calories that people expend in breathing actually means that there are weight issues there.
People can typically experience abdominal pain and bloating, diarrhea or constipation, and because of the levels of salt that people have in their sweat, in fact, in summer, you can sometimes see salt crystallising on the arms of someone with CF, so that’s the level of salt that comes out.
Dehydration is a really key factor, and fatigue as well. And again, every person is different, but those are the types of things that are usually quite common among people with CF, and we do see as they get older into adulthood, that there are often reproductive issues that they will face as well.
Megan Gilmour 20:59
Yes, that’s a lot, a lot for a young person to deal with and in a chronic condition, there’s also that advancement of the impact of the illness over years as well. That’s throughout I’m thinking of a school child’s life from five to 18.
Stephanie Quattromani 21:27
Yeah, there’s a lot happening, I think, especially in that age group as well. You know, as they start to take control and gain independence over more of their medications, there is a significant treatment burden there. And so definitely there is a constant there of managing their CF on a daily basis that that really doesn’t go away.
Megan Gilmour 21:48
Yes, thanks for pointing that out. As well as illnesses and diseases, there is also the treatment burden into the mix there, which is its own ecosystem of complexity. And put it this way, it’s not easy to forget that you you’re living with this, having to engage in those treatment protocols, and you know which are lifesaving, and thank goodness that we have advanced to the point where our treatments are getting better, and lifespan is increasing. So, this is the good side of it, that it’s great to acknowledge that as part of it.
Stephanie Quattromani 22:31
Absolutely and you know, it’s that dichotomy where we’re so grateful for these treatments and the opportunities that it’s given people but being realistic that people don’t really want to have to do one to two hours of daily physiotherapy. Taking medications and lots of them is just a lot for people. And so, yeah, you’ve got this real dichotomy of experiences when it when it comes to managing this treatment ongoing.
Megan Gilmour 22:59
And I suppose this all affects school life as well, and we’ll be able to drill into that in a little bit more detail in a moment.
Turning now to siblings and peers, before we deepen into the conversation about school, what do you hear about siblings and peers of kids with cystic fibrosis, and how those young people are impacted, and what should families be across?
Stephanie Quattromani 23:27
I really love that this is a question because, you know, we cannot forget about the stress that this causes for siblings and their experience, especially if they are seeing their brother or sister who is unwell or hospitalised, it can bring a lot of emotions to the forefront of their experience.
And so, we also need to recognise that the impact on the family unit, so during a hospital admission for a child with CF it can be really challenging to balance time between the child and hospital and their siblings, and even things like getting ready for school or extracurricular activities can be a lot harder for parents to navigate and manage during these times. And so, we know that a support network is really important to help manage that.
And we just talked about treatment burden. You know, the challenge of managing CF itself and the hours spent on daily physiotherapy and airway clearance. This is all time that’s possibly where the parents’ attention is away from other children in the family.
And so, you know, CF, there might be one child living with CF, but it really impacts the entire family unit. And so, we really say that, you know, open communication is really important, but also giving time to their siblings, and so making sure that they have the support that they need as well is important, and we always say it takes a village, and that’s where that support network is incredibly important for part of that.
Megan Gilmour 24:54
Yes, and I mentioned there that there’s some extra expectations of siblings too, which might have to do with being hyper vigilant about their exposure to viruses and flus and respiratory things that will have an impact when they bring them home – like a real, a significant impact. Does that come up as well?
Stephanie Quattromani 25:19
It does. Yeah, and that’s a great point. Look, the whole family unit, siblings as well, need to be definitely, really mindful of if they’re sick and unwell, you know, the primary concern is, well, let’s make sure that this doesn’t get passed on to their sibling who’s living with CF and trying to put parameters in place so that that does not happen.
You know, it can be really stressful for that family unit. And we do know that for people with CF, typically being around stagnant water, for example, can pose a risk of infection because of the prevalence of Pseudomonas in the water, which can be harmless to lots of people. But for people with CF, that can cause real issues.
And so even things like having a sand pit at home might not be something that the parents want to want to do, or a fish tank or anything like that. So, it definitely does impact the family unit in lots of ways. And so there is that hyper vigilance that exists in the family.
Megan Gilmour 26:21
And this question, I shudder to ask it, but because this is a genetic condition, do you have families who have more than one child with CF?
Stephanie Quattromani 26:35
Yes, absolutely, we do. And yeah, so it is genetic condition. We know that if the parents are carriers of CF, for every time that they have a child, there’s a one in four chance that that child will be born with cystic fibrosis.
And so, it can be really difficult for those families when they’ve got two or even more children with CF in the same household. I suppose cross infection is impossible to manage between those siblings, and so it’s how to keep them well together, but yes there’s a there’s a lot of challenges associated with that.
Megan Gilmour 27:13
Yeah, that’s what my mind went to. Was I thought the answer would be yes, and then that cross infection issue on top of the significant multiplication of all of the treatment burden and the care and everything else.
Stephanie Quattromani 27:31
Care and even economic costs. Because we know that for families between the treatments and medical equipment CF is really expensive for families to live and work with, and, you know, time taken off work to look after kids with CF and so forth. And so, we do see that really spiral with parents who have more than one child with CF.
Megan Gilmour 27:57
Yes, and this is on top of the mental health issues that parents might already be facing in their care, and the treatment management and the management burden of it. And we’re using management burden, not because parents see their children as a burden, but we’re talking about just on top of the matters of life, there’s this care burden that is going on in just weighing on and increasing what families have to manage, and the dynamic between all of that.
And we didn’t touch on it with siblings and peers, but siblings in particular, do you find that there are impacts on their mental health?
Stephanie Quattromani 28:49
There definitely have been studies that have that have shown that siblings, and I believe it’s actually more than just CF, I think it’s across lots of genetic and chronic diseases, where they do find that there are higher rates of anxiety and whatnot in the siblings of those who are unwell.
We also know that specifically for CF there can be education challenges for those siblings. So especially if you know at home, things are quite challenging, we know that that can result in challenges to their education and what that looks like.
Megan Gilmour 29:27
Yes. And I also want to call out your mention of economic struggle, and we have these conversations on Live & Learn about potentially one parent, typically, mothers taking time off work or having their, you know, disruptions, disruptions to their work life outside the home, on top of, well, in some cases, having to completely leave their work life in order to fulfill their care of their children and these circumstances.
What we haven’t picked up is the economic burden, the economic issues and management in well, obviously in CF, we’re just picking that up now. But also, in other circumstances where there’s a chronic health condition. And so, it’s not just about economic losses to do with work, but it’s also the cost of the treatment and management itself as well. So that’s a really important one to flag, and it also just speaks to how much pressure people are under in these circumstances. So, thank you for raising that.
Stephanie Quattromani 30:50
Yeah, look, it’s certainly something, and especially with the cost of living at the moment, it’s certainly something that we’re seeing in our community. And you know, to provide an example, we do provide emergency financial assistance to families and relief funds to families who are facing financial hardship, and the demand for that this year has actually been higher than what it was in the pandemic.
So, the cost of living associated with all of the normal costs associated with managing CF, everything from a high fat, high caloric diet, which, you know, grocery bills will often explode because of that to just the cost of getting to and from hospital, the medications and the vitamins and the supplements, nebulisers, which are used to inhale medications.
It’s quite astronomical when you add it all up. A recent study from the UK found that the equivalent daily annual cost for living with CF was about Australian $13,000 per year per individual with CF. And so, it’s certainly not small, and that, of course, doesn’t take into consideration time off work and so forth.
Megan Gilmour 31:59
That’s mind blowing and so concerning. And just want to repeat that the pressure, the financial pressure that families who have a child, one child or more with CF, their financial pressures right now are more significant than during the pandemic.
Stephanie Quattromani 32:20
Yes. Yes.
Megan Gilmour 32:33
Wow, there’s a lot going on out there. And this is precisely why we want to bring this to the forefront in our conversations about, you know, across the board, about families in these circumstances, just so important.
Stephanie Quattromani 32:39
Absolutely, you know, these conversations are important. And certainly, a recent study actually showed that those who are facing the highest financial difficulties are actually those who are doing the worst health wise.
And so, it’s a really vulnerable population. When we’re thinking about these financial troubles, it’s often those who are really unwell with the really low lung function. And so, yeah, there needs to be a really concerted effort to how we can support that group of individuals.
Megan Gilmour 33:06
Yes. And then we get into the future life as an adult of children with CF and this is where we’ll head into talking about school now.
Steph, what’s the current population of school aged children with cystic fibrosis in Australia and how accurate is the number you’ll quote? Is the data tracked for example?
Stephanie Quattromani 33:29
It is. We have a fantastic Australian data registry, so I do have an exact number as of 2023, of those who were involved in the data registry. So that accounts for the majority of people in Australia with CF.
So, for those aged between six and 17 years of age, we’re looking at about 1137 as of last year’s data.
Megan Gilmour 33:52
Yes
Stephanie Quattromani 33:53
So quite significant.
Megan Gilmour 33:54
It is quite significant. And given the complexities of it and that unlike some other diseases or even critical illnesses, is across the whole school life. So, it’s unlike cancer, for example, where it be a period of time, we’re actually talking about every day of the child’s school life they are living with cystic fibrosis.
Stephanie Quattromani 34:21
Absolutely.
Megan Gilmour 34:23
So, do kids with cystic fibrosis currently miss a lot of school, and if so, why?
Stephanie Quattromani 34:30
So, every child is different, and we’ve certainly seen things improve over the last few years, and that’s because of just the new treatments that have come out. But generally, children will have four clinic visits every year where they meet with their CF team. And even though this is just one day, it can actually take a number of hours at the desk. So often it’s a whole day written off from school.
And then, of course, if they are ill, on top of that, you’ve got your just sick days, plus hospitalisations, and so if someone is quite unwell, they’ve had a drop in lung function, they’ve got a lung infection. Hospitalisations do mean that they need to be treated with IV antibiotics, and they can last up to weeks at a time for kids currently and so very dependent on each of the individual circumstances. But we do see that absences are a lot higher in kids with CF.
Megan Gilmour 35:24
Yes. So, what are the critical times then, in a kid with cystic fibrosis’ school life?
Stephanie Quattromani 35:32
So, there’s a few. In primary school this is a really important time where kids are learning their independence away from their parents and interacting with others. So, for example, learning to take their enzyme medications with food throughout the day when Mum and Dad aren’t around. You know, managing their CF in a different environment, using their hand washing practices at school. So that signifies quite an important milestone as they enter into primary school.
Similarly with high school, it’s quite critical because, of course, in high school, you don’t just have the one teacher who knows everything about you and is probably very, very well educated on CF but you have many, many teachers and many subjects that you’re navigating. So, in high school, what we really see is the importance of self-advocacy and really being able to communicate what their needs are as they interact with their different teachers throughout the school year, and that’s quite critical, because that will set them up for success in their later years.
Finally, probably the last critical point is actually when they’re in those final years of high school. Around that time, they’re actually looking and preparing to transition from pediatric into adult care. So, they would have had their whole lives up until this point, managed by their pediatric CF teams. And the period of transition where they actually move to a different care team in an adult care center can be quite disruptive, and is a very, very important process, because essentially, they’re the ones who are starting to take control of their CF and their management. And so, this is a really critical part.
And of course, in those later years of high school, they’re managing adolescence and puberty and examinations and all the rest of it. And so that’s quite a critical part. And actually, we know that engaging young adults in that time in their care is really important, because if it’s not done well, then there’s a risk of them falling out and not staying on top of their care with the adult CF team, which we know, of course, can cause issues down the road in terms of being on top of their treatments, that’s really important.
Megan Gilmour 37:44
Yeah, and the fact that, you know, they’re across those school years, they’re picking up more and more of their own care, I guess, in terms of treatment and management and understanding what that is, and their agency as individuals in that process and those critical times.
I also imagine that transitions in and out of school, if they’re having a lot of time off school, that become quite that well, it could be challenging for them, depending on how often that happens and how long their absences are.
What do you see when children are not in the classroom? So, are they getting their support from their schools? What’s happening for them?
Stephanie Quattromani 38:34
Yeah, we do. We work really closely with a lot of schools, especially when they have had long absences; maybe they’re in hospital for a long period of time, or maybe they’re doing hospital in the home. And look, one of the silver linings, let’s say, from the pandemic, is that people have gotten a lot better with doing remote learning and setting up practices for remote learning. You know, I think teachers had to adapt really quickly as a result of the pandemic.
And so, what we are able to see now is that is flexibility around how people can engage still with their teachers whilst they’re in hospital, and hospital in the home, if they’re well enough to stay on top of classwork, and, you know, potentially do assignments in their own time. So that’s certainly improved.
And you know, as long as they have access to a laptop, the teachers and the schools that we’ve engaged with are really – it’s been really wonderful to see how they will work with students to ensure that they do get the best learning outcomes even with their circumstances.
Megan Gilmour 39:35
Yes, that’s really good to hear. Does that include two-way digital connection into lessons as well. So, maintaining that school continuity, so that the young person, the primary school student, even can take their lessons in real time?
Stephanie Quattromani 39:52
It’s possible. It’s definitely possible. I’m not sure if I’ve seen that this year. We’ve certainly had instances of it, where they can potentially dial in using Zoom or whatever it is that they use in the classroom for certain sessions.
It also depends on how well they’re feeling as well at home. And so, you know, sometimes they’re like, I don’t want anyone to see how I look right now. And that’s completely fine. So, yeah, it’s certainly an option. I suppose it’s very dependent as well on what the capacity and capabilities are of the school to be able to set that up in the classroom.
Megan Gilmour 40:25
Yeah, so that’s what we’ve been working on since 2017 is two-way, digital connection for students to their classroom in real time, and we’ve provided the technology to do that. It’s been telepresence robot technology.
And what we’re working on now is to get schools to be able to do this as a standard of operation with the technologies that they already have in schools. And we actually have an amazing story of a student here in the ACT who had used the telepresence technology which was situated in their school to dial in when they couldn’t be there. So, think from year six through to year 12 so far and unfortunately, that young person has had to withdraw from schooling in the final year due to chronic pain, which is a different circumstance that they hadn’t had before.
But they report that the reason that that school continuity has been able to continue, and that schooling to that level was able to be attained, was because of two-way digital connection into the classroom for lessons. So, this is what we hope can just become business as usual.
Stephanie Quattromani 41:50
I think that’s amazing. You know, that’s just incredible. Yeah, look completely, I think, as you know, with the technology that we have now, you know, it’s the implementation of it, and so that’ll be really, really exciting to see come through in the next few years.
Megan Gilmour 42:06
Yeah, and a big part of this is kids, like adults, want to be socially connected. It’s, it’s innate. It’s innately human, and being constantly separated from your peers, even if you can continue your learning is not the same as having all those rites of passage.
And you know, there’s the academic part of it, but there’s so much more to school: friendship, social connection, being away from the adults in your life, you build identity building and those moments of shared experiences that you want to be a part of.
And you know, the gaps in attendance can often break those shared experiences which create further isolation when kids are back at school. So even playing, you know, just being able to play and have fun.
So that’s what we’re working towards and hopefully that becomes a thing, and then our job will be done. We’ll be bowing and leaving.
But what should families and schools be prepared for then, at different times Steph? What’s your take on this?
Stephanie Quattromani 43:27
Yeah, look, I think that the important thing is that, you know, students with CF are young people first. They will encounter and they will navigate all the challenges that children and young people go through during school, you know, going into adolescence, all the social things that we were just talking about and the changes associated with that. That is who they are, first and foremost, the CF is just an added thing on the top of it.
And so being really mindful to look out for the same things that you would in any other young person who does not have CF is really important, and certainly just bearing that in mind as they navigate through those years.
Megan Gilmour 44:08
Yeah, and I love what you said just there, and I’d like to highlight that while young people go through their medical condition, their treatments, kids with CF will also go through things in life that we all go through, all those developmental stages, all the awkwardness, all the changes to the body, whatever all those things are, you know, having a crush on someone, having a heart broken.
Whatever those things are, they’ll navigate those matters of life at the same time through or on top of what’s going on for them clinically. So just another moment for kindness and empathy to be directed towards these kids for the resilience that they have, it’s just incredible.
Stephanie Quattromani 45:04
It is, absolutely, so much resilience. And you know, when we talk to young people about what they would like to see in terms of content and information, you know, a lot of them are saying things like, can I have, like, an article or something on how I can tell my girlfriend that I have CF, or, you know, how do I manage partying and CF, what does that look like?
You know, all of the things that they’re going through with the addition of CF, it just brings it back to, you know, it’s very grounding. And I think that it’s important that, you know, it’s the individual first. And with that comes a whole myriad of experiences that you’re going to see.
Megan Gilmour 45:44
Yeah, I’m living a life and I’m having this thing at the same time. So how do I do life with it? And those questions are always going to be, you know, there’s a certain level of clinical knowledge that you get, and then everything else is what we do – is working out life right –
Stephanie Quattromani 46:04
Absolutely,
Megan Gilmour 46:04
Going through from one day to the next with whatever presents.
Yeah, yeah. I really want to acknowledge just how – you know this isn’t putting a halo on the heads of these kids – it’s just saying that they are dealing with things that many of us don’t ever have to deal with, and they’re doing it from such a young age.
And we hear a lot about young people needing more resilience. I hear that coming up a lot today, and I think about the kids that we work with and for, and you do and, wow, they’ve got something to teach us about this.
Stephanie Quattromani 46:43
They really do. And especially because, you know, CF is an individual condition, people would – they don’t know that person is living with it – they’d have no idea the amount of extra work and treatment burden and all that kind of stuff that they’re navigating behind closed doors.
So, yeah, look, I mean, often people say they don’t know any differently, this is just their life. But recognising that yes there’s a there’s a beautiful resilience there.
Megan Gilmour 46:43
And flagging that too – the invisible illness, so something that’s having such a profound effect, and we may know someone, or maybe sitting next to someone, that has CF and just not be aware of what that person’s life is. I think it’s another one of those things of you just don’t know what people out there are going through, what they’re living with, and empathy goes a long way in our daily interactions, because there’s things behind the scenes, right? There are all sorts of things.
Stephanie Quattromani 47:48
Always absolutely
Megan Gilmour 47:51
So, what are the biggest challenges and vulnerabilities facing kids with CF at school?
Stephanie Quattromani 47:56
So, we’ve talked about missing school, and certainly we recognise that for those who are really unwell, it can be really difficult to catch up on work and assignments. And look even for those who haven’t necessarily had as many absences, but just managing their daily treatments on top of schoolwork can be really challenging from a time perspective.
You know, we certainly have some kids who are doing anywhere between one to two hours of daily physiotherapy every single day in airway clearance. You know, add that on top of a school load and that can be quite a lot.
And probably the second one is around, and we touched on it before, is that risk of them being sick or catching any sickness from others at school. So, we do discourage kids, and after the pandemic people are pretty good around not coming to school if you’ve got a cold, or if you test a positive for COVID or if you have the flu, because those respiratory illnesses can have such a significant impact on their student pair living with CF.
And so, people with CF are quite vulnerable for these illnesses. It can put them back in terms of lung function and could land someone in hospital. So, it is really important, I think, for the school to communicate with parents and families around you know, keep your child at home if they’re unwell.
Plus, just basic promotion of hygiene at school, things like having tissues available and coughing and sneezing into the elbow using hand washing techniques and so forth. We think about vulnerabilities, that’s probably one of the biggest ones in the school setting, which we’re looking at.
Megan Gilmour 49:34
Yes, and what’s happening now to address challenges and vulnerabilities, including missing school. And do you think it’s enough?
Stephanie Quattromani 49:43
Look we are seeing schools learn and adapt, and primarily that is actually due to the pandemic, because we had so much remote learning then, we have seen that teachers have gotten a lot more comfortable with doing things like, you know, sending things via email. And potentially jumping on a Zoom call.
We haven’t seen as much of that remote learning in terms of dialing in that two-way communication will be great to see that in the future. It would be really, really fantastic. But look, we’re also seeing the value of things like social media in terms of keeping kids engaged with their peers when they’re not at school, which has been a really nice, I suppose, way for them to connect with others.
And in terms of the liaising with others at the school around staying home if they’re unwell. You know, sometimes, some schools will send out a letter around every year just reminding people to keep their kids home if they’re not well, often it doesn’t even mention the word CF, especially if that family doesn’t really want it disclosed.
There are certainly ways to do that and communicate that out, but it is an ongoing thing, and I think that has to be really embedded within the school environment that that’s normalised around if you are unwell, even if it’s just a cold, stay home. Stay home until you’re well. And so –
Megan Gilmour 51:05
It helps everyone, doesn’t it? That’s everyone. It’s going to stop that communicable illness, break the cycle of it, so super important for the safety and wellbeing of vulnerable people, but also just good practice.
And I hope – picking up on something you said earlier – that the pandemic has left people with some level of increased awareness about coughing, sneezing, and I’m not talking about kids with CF coughing, but just a general population. And, you know, hand hygiene, all of these things that just keep us healthier.
Stephanie Quattromani 51:55
Absolutely, it’s beneficial for everyone, isn’t it? You know, we don’t want to catch cold either. Even though it might not land us in hospital, we certainly don’t want it. And so, yes, look, we have seen that improve, and it’s become a lot easier to have those conversations I think, as a result of that, it’s a lot more normalised. Even, you know, if someone’s wearing a mask, then that’s also a lot more normalised, and people don’t look at it twice as much anymore as a result.
And so, there are silver linings, which we’ve taken from that, which is great, but like we say, there has to be a constant focus on that, and it’s very easy for that to just kind of fall to the wayside. So, it’s that constant communication with schools, and they’re usually really, really accommodating and really fantastic to work with in that sense.
Megan Gilmour 52:42
Yeah, that’s really good to hear. And you know that that improvement that we that global improvement that we received through a mass public health crisis is hopefully, you know, some of those lessons are embedding into our systems now as well.
The other thing I just wanted to say for anyone listening is that cystic fibrosis is covered by the Disability Standards for Education as an illness, and the disability standards apply to every single school in Australia. It’s a great, powerful regulation that is under the Disability Discrimination Act, and so in a nutshell, it assists with students being able to enrol in their school of choice and stay enrolled and to be able to learn alongside peers, to have access to school, and to have facilitation for access to school.
For example, we know that wheelchair ramps are there for that reason, and that’s the way that we look at two-way digital connection or telepresence technology as an on ramp for access to the classroom, and the standards also provide for assistive devices.
So that is that technology and additional support where the school can get extra funding as well under the disability standards, which means that you know different accommodations can be made in schools and supported by learning assistance, perhaps, or technologies or a range of other things, and of course, the reduction of harassment in all of that as well.
So, access to the curriculum, access to the school, being able to enrol in your school of choice, being able to get additional support to create equal opportunity and reduce equity gaps – super important, and an Individual Learning Plan is also going to underpin that. So, to provide these different accommodations where the family can, or families can talk to the school and develop a plan, a clear plan that’s documented and hopefully that’s portable from home to hospital to school, and it’s a sort of a – if that happens, then we’ll do this, or just ongoing adjustments and accommodation.
So, we just plunk that there, because they’re the sorts of things that will make a difference. You mentioned some things there Steph, like potential for additional time for assessments, and certainly, you know, addressing things that would address fatigue and just enable that student to be able to participate fully as they can, as much as they can, in a way that gives them equity alongside their peers who in this case, don’t have CF. So, it’s really good for people to know that and use that language with schools that helps to get things done.
Stephanie Quattromani 56:04
Yeah, I’m so glad that you brought that up, and I will actually say we work with a lot of schools with the Individual Learning Plans. And so, if people are looking for a template for CF, then please contact CF Together, because, yeah, we have some really great templates that can be personalised, and work with the schools to be able to get one that’s suitable for the child and the students. So, like, I say, really important and great to have that flexibility as well.
Megan Gilmour 56:05
Yeah, that’s so important to understand that resources there, because it is a way to reduce the burden that we’re talking about, and I’ll probably just throw in here that you know what we hear and what we know from, from our own lived experiences, personal and professional, is that there’s the medical condition, the health condition, and then the other thing that’s most important to families, is school like so that they’re always sitting there together.
And when families have to work really hard to get support in schools, it’s just an added thing in the whole mix of everything else that makes it really, really hard and distressing. So, for you to have that resource over there is really super cool for people to be able to benefit from that.
So, as we wrap up, is there anything else we should be asking about school quality of life for kids with cystic fibrosis?
Stephanie Quattromani 57:43
I think probably the only thing that we haven’t touched on is being able to take medications at school. So, this is particularly relating to probably the most common medication that lots of people with CF are on, which is Creon. This is essentially a pancreatic enzyme which helps people absorb the nutrients in their food.
And we know that in schools, usually the requirement is that medications need to be kept at the front office, or if there’s a, you know, with a school nurse, for example. And that’s for good reason, because, of course, we recognise that there are things in place in terms of making sure that they aren’t accidentally ingested by another child at the school, but also to make sure that that child is actually taking that medication.
The interesting and quite unique thing about Creon is that this sits slightly outside of that which can cause a lot of confusion, and so we work really closely with schools and families to actually ensure that kids are able to access this in their lunch box or in their school bag. And the reason they’re able to do that is because this is actually replacing just the normal pancreatic enzymes that we produce anyway.
So, if someone accidentally ingested, say, a whole bottle of this stuff, it actually wouldn’t cause any side effects. It would just kind of pass through. And so, because of that, we really do encourage that schools to be able to keep that medication with the child as long as they’re of the at the age and responsible enough that they can take it themselves, so that they can actually do that independently.
And so, this allows them to have more time at recess and lunch, because, of course, otherwise, you’re popping to the school office every time they need to eat. And so that’s just something that is certainly a learning for kids when they’re engaging with schools and whatnot and lies slightly outside of the norm that you would usually say for medical conditions but has quite a significant impact on a child’s quality of life when they’re at school.
Megan Gilmour 59:44
Yes, thanks for raising it. And I’m sure there’s other medications out there that have a similar sort of urgency or that complicate a school life. So, I guess we’ll discover this over time with more and more conversations, and we can also plant in there that, along with the individual education plan, that there’s a safety and health plan at school too, that that goes alongside the learning plan and sort of sits hand in glove, I guess, to make sure that that young person’s school life. I mean, the first thing about quality is that it’s safe and that they’re getting what they need. And then you know that everything can support from there on. So, they’re the two things that we talk about as well.
So, this brings us to the end. I mean, there’s just 1000 more questions I could ask, but I won’t, because you’ve been so generous today with your time and knowledge, and it’s just so clear how much you care about these kids and their families and that you’ve dedicated this part of your career to bringing everything – all your gifts and talents forward to make a difference in their lives, is something that we want to acknowledge and celebrate.
It is people like you who make a difference in really tough days so thank you from us. And so, in our call to action, Stephanie, what’s your what is your call to action for cystic fibrosis in seven words or less?
Stephanie Quattromani 1:01:32
Oh, seven words is hard, but I will say, firstly, look, thank you so much for having me on and for giving us the opportunity to talk about CF and everything. I think that platforms like this and the work that you’re doing is so important, and it’s such a pleasure to be able to work with organisations like yourself on really important issues. So, thank you.
I don’t know about seven words or less, but I would just say if anyone, whether that be teachers or principals or schools, parents, students. You know, if you’re looking for information and support resources for a child, any student with CF at a school, please reach out to CF Together. You can contact us on our website, CFtogether.org.au [https://www.CFtogether.org.au] you can also call our national helpline, which is 1300 CF help.
We have an amazing team, you know, I have to acknowledge the incredible team of social workers and case managers that are absolutely amazing and work across Australia to support people with CF and they are here for every for anything that comes your way. So, thank you again.
Megan Gilmour 1:02:38
Thank you that’s so good, Steph, you did my job, but I’m going to do it again. So, a big shout out to CF together, as Steph said, you can find them at CFtogether.org.au, and you have the numbers there. And I’d like to say, reach out and give generously as well, because organisations like ours need every penny we can get to do the greatest amount of good that we can do. Thank you for joining me today, Stephanie.
Stephanie Quattromani 1:03:11
Thank you so much.
Megan Gilmour 1:03:15
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like share comment or leave us a review, because we love hearing from you. And if you want to donate, head to missingschool.org.au, because every dollar makes a difference.
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