Understanding Carers’ Needs in the Epilepsies - Dr. Florien Boele, SEIN (Netherlands) & the University of Leeds (UK)
Unpaid carers provide £184bn of hidden support in the UK! Dr Florien Boele shares why carers matter in the epilepsies, the impact on their wellbeing & finances, & how research is starting to recognise their vital role.
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Episode Highlights
Why unpaid carers provide hidden support - worth £184bn in the UK alone!
The emotional, financial & quality of life impact of caring for a loved one
How research is recognising carers’ wellbeing & how you (PWE, caregivers, and clinicians) can take part in Florien’s live study
About Dr. Florien Boele
Florien is an academic with a keen interest in family caregiving, quality of life, and symptom management. Most of her research to date has focused on people with brain tumours, but she is now broadening the scope to include other groups of people who are confronted with epilepsies.
Full profile florien-boele
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Trailer
00:00 Florien Boele
“We recently did a literature review; just because we wanted to see what is already known about the quality-of-life outcomes of adults with epilepsy and their carers. And we could find 139 articles (which is… that's not bad). But when we looked at the ones that also talked about the outcomes for carers, there were only 16 of those articles!”
Intro
00:21 Torie Robinson
"Welcome to Epilepsy Sparks Insights! I’m your host, Torie Robinson, and here we talk with specialist clinicians and researchers to spark improved understandings of the epilepsies worldwide. If you’re new here, please subscribe so you don’t miss future conversations.
Meet Dr. Florien Boele - a researcher in psychosocial oncology & caregiving
Today, I’m joined by Dr. Florien Boele, Associate Professor of Medical Psychology at the University of Leeds and SEIN. Floreen is here to share her important research into the experiences of carers — the family and friends who provide vital, unpaid support to people with epilepsy. We’ll be exploring why their contributions matter, how caregiving impacts quality-of-life, and what needs to change in both research and clinical care.
Who are carers? Paid vs unpaid explained
00:58 Florien Boele
I should probably start at the beginning. So, who are carers, really? Because there's often some confusion when I'm talking about carers. Sometimes people think I'm referring to paid carers - so, health care professionals or support workers that provide care as part of their job role. But in the sort of scientific field of caregiving, we're talking about unpaid carers. So, they are basically family or friends of people with a specific condition that may need practical or emotional support. And that can be any kind of support, really. So, it can be very practical: around helping people manage hospital appointments or take medication, or picking up prescriptions, driving people somewhere, or helping them cope with the social or emotional consequences of their diagnosis. So, there's various names that are used for carers. So, we've got caregivers, informal caregivers, or family caregivers. But in the UK, people tend to talk about carers.
How many carers are there in the UK? Their £184 billion(!) contribution
02:01 Florien Boele
It's estimated that 5.8 million people are considered carers in the UK. And there's this report, I think it was commissioned by Carers UK, which showed that the social care and support that is provided by these unpaid carers saves about £184 billion a year to the British economy, and that is roughly equal to what is currently spent on healthcare.
02:33 Torie Robinson
Everybody taken into account in the study, are they all unpaid?
02:35 Florien Boele
So, these are all unpaid carers. Yes.
02:37 Torie Robinson
Wow, okay, wow.
02:39 Florien Boele
Yep.
The hidden personal costs of caregiving e.g. sleep, stress & finances
02:40 Torie Robinson
Okay, but caregiving is not easy, right? There's a lot to it. I think those who haven't been in the position of carer might not necessarily understand that. Is that right?
02:49 Florien Boele
Even though it looks as if, you know, on the whole, this saves the UK economy, this huge amount of money, there is a very big personal cost to families as a result of having to provide care. And of course, it's not all bad - a lot of people do this because they care for their loved ones, of course, it's what people…
03:09 Torie Robinson
Yeah.
03:10 Florien Boele
…do for each other. You know, we are social creatures, and that's the way it should be, really. But it does place an additional strain on the family situation for sure.
03:23 Torie Robinson
I mean, I've spoken to many caregivers/carers, and they'll not say it directly. Like, “I love my loved one to death. I love them. But I can't generate income like I used to. I don't get enough sleep. Often their weight increases because they're not getting time to exercise or because their sleep's affected, their mental health is affected. And all of these things can trigger other diseases later on down the line and severely impact their quality-of-life.
03:51 Florien Boele
Yeah, yeah. And that is common across caregiving in different disease areas for sure, but particularly in people who provide care for someone with a more chronic condition. Because obviously, yeah, it takes longer, doesn't it?
04:10 Torie Robinson
Never gonna stop, basically.
04:12 Florien Boele
Absolutely. Yeah, yeah. And of course, it's not bad across the board - there are people who maybe don't struggle at all, but there are people who can struggle a lot. And I've heard someone say in one of our focus groups (this wasn't epilepsy specific, but it was someone who was providing care) and they said that people would ask them “How are you still standing?” And then their response was “Well, if I'm not still standing, then I'm crumbling down on the floor.”. I mean, it was the only thing they could do was keep on going. So yeah, I think that highlights just how burdensome it can be. Not saying that that's the truth for everyone.
04:55 Torie Robinson
And it's not just burdensome - that's a bit too long a word for myself - burdensome - amongst those who are the carers, but also, I think the entire family can be affected like that. And indeed, you know, if they are still in a regular paid position, position of employment, that is affected. And then if they can't work (“work-work” in the traditional sense; of course, caregiving totally is work), then they're not contributing to GDP, and it's really not great, necessarily, for the government. So, I don't know why it's not being looked at in this way by authorities.
05:34 Florien Boele
I think there is an increasing sort of awareness of the contributions that carers make and the support needs that they have, but actually changing the situation, that's a different kettle of fish.
05:48 Torie Robinson
But first of all, we need research into it and some good old empirical evidence that you are seeking to create yourself. So why are you studying this? Tell us about your work.
Current studies into the impacts on carers
05:58 Florien Boele
Yeah, so we recently did a literature review; just because we wanted to see what is already known about the quality-of-life outcomes of adults with epilepsy and their carers. And we could find 139 articles (which is… that's not bad). But when we looked at the ones that also talked about the outcomes for carers, there were only 16 of those articles that looked at carer outcomes. So that's only 11 and a half percent. And just by contrast, I did a similar review in… that looks at carers of people with brain tumours (which is less common than epilepsy), and we found 157 articles that looked at carer outcomes. So, I think it is quite a neglected area in epilepsy.
06:44 Torie Robinson
Weird!
06:44 Florien Boele
Mmm.
06:46 Torie Robinson
I wonder why that is. Are you going to find out why that is in your research?
06:49 Florien Boele
Haha, that's probably not a question I can answer, but I think, you know, it just shows that there's a lot still to be done and a lot still that we can do.
Carer quality of life and physical, emotional & social challenges
07:01 Torie Robinson
I'm really big on talking about quality-of-life for people with an epilepsy -so, whether that's looking at seizure control, whether that's looking at their psychiatric state, whether that's looking at their housing situation, or their physical fitness, because all of these things, all their employment, and all of these things play in. I guess it's kind of similar for the carers themselves.
07:24 Florien Boele
Even though we could only find 16 studies (so I'm sure there's a lot more that is impacted than what we could find in these studies), but we did see that carers’ physical functioning is impacted, for example, by sleep problems, headaches, consequences of chronic stress that impacts on things like high blood pressure. Their emotional functioning was impacted by worrying and feeling stressed, depression, and anxiety as well. And social functioning was impacted by perceived stigma, shame, isolation. And then of course, that could have a knock-on effect on employment and finances too. And we did notice some links to patient functioning as well; carers burden appeared to be higher when the adult with epilepsy had more severe cognitive issues - which is what you would expect. But there was, really, that was all we could find in the literature. And I'm sure there's much more to be said about quality-of-life of in carers than we could find, for now.
08:27 Torie Robinson
Just to give you one example, a chap, know, absolutely amazing bloke, and we were talking about what it was like for his family. And he was saying “Well, it's amazing we're still married because almost all marriages split up when they're in a similar situation.” because it's so, so stressful, whether it's down to the emotions, whether it's down to the financial situation, whether it's out of worry or anxiety, trips to the hospital, whatever, it really affects the whole family.
08:55 Florien Boele
It does, yeah. Yeah, absolutely.
Research - core outcome sets measuring quality-of-life outcomes for carers & how people can take part
08:56 Torie Robinson
What are core outcome sets? What are you gonna be doing?
09:00 Florien Boele
Core outcomes are sets of outcomes that are supposed to reflect what matters most to the people it's about (so in this case, people with epilepsy and their carers). And there is one that exists for people with epilepsy that's been recently developed by a different group, and we now want to look at a core outcome set for carers. And the reason that we want to do this is because we want to keep track of quality-of-life outcomes as part of our clinical care at the institution that I work at which is SEIN. It's a tertiary referral centre for epilepsy care in the Netherlands. And what we want to do there is set up this system of tracking quality-of-life outcomes by using questionnaires, because it shows in a very clear way how someone's doing. And by linking that directly to the electronic health record, it can really help shape the clinical consultations and make it easier for the healthcare professional to find the right support for the people with epilepsy and their carers as well, which I think is quite crucial, because for carers, particularly finding support can be super-difficult. But right now, we're at this point where we do know what needs to be measured as such for the adult with epilepsy, but we don't know what needs to be measured for the carers. So that's what we're out to do, really. We want to work together with different stakeholder groups. So, we want to work together with people with lived experience (though that's the key group!), the healthcare professionals, and the researchers, to identify what is most important to the quality-of-life of carers of adults with epilepsy.
10:47 Torie Robinson
Does that mean that there's a questionnaire or two for people interested, to fill in?
The way we do this is it's called a Delphi study, in case you're familiar with it (it's named after the ancient Greek oracle, ha!). And essentially, what we do is we invite people to voice their opinions. So, it is a questionnaire, but it's purely about opinions. And we ask people, we send people a long list of outcomes that are maybe relevant to the quality-of-life of carers with epilepsy, based on the literature and our own experience (so, all the things that we've just talked about are included, for example). And we ask people “Is this outcome relevant to carers? Is it feasible to measure it as part of clinical practice? And is it something that can change over time?”. Because if it's something that can't be changed, then we shouldn't really be measuring it, because what's the point, right? We want to be able to improve outcomes for carers. And then, of course, all these different people that are involved will have different opinions, and that's perfectly fine; that's the idea behind it. And then we do a couple of rounds to see what really is the most important for all these different stakeholders in terms of quality-of-life for carers.
12:01 Torie Robinson
Now, having been involved in research like this before, personally, how I answer a question will… can differ massively upon if I've had a stressful day or not. And I can imagine that being the case for many carers, and the people with epilepsy, and the clinicians. How do we take that into account?
12:18 Florien Boele
Well, you don't have to take anything into account!
12:21 Torie Robinson
Okay. It's just because I worry it won't give the whole picture.
12:26 Florien Boele
Yeah, and it doesn't have to because we're asking people's opinions. And like you say, you know, this can change over time. And the way this kind of study is designed is because we ask all these opinions to different people. It kind of… it reflects the general opinion. Right. So, it's…
12:47 Torie Robinson
Okay.
12:47 Florien Boele
…about reaching a consensus. So, we don't all have to agree 100%, and it doesn't have to be exactly the “right” answer. Because, like you say, these things can change. If you ask someone in the morning, you might get a different answer than if you ask them in the afternoon after a very stressful day. But the most important thing is that if you answer these kinds of questions, that you give it your honest opinion, basically.
Closing thoughts & thanks
13:12 Torie Robinson
Thank you so much, Florien, for shining a light on the role of carers in epilepsy, the challenges they face, and the importance of recognising their needs in both research and practice. And thank you for watching Epilepsy Sparks Insights!”
"If you found this conversation helpful, please give it a like and subscribe, and hit the bell so you’re notified when new episodes drop. I’d also love to hear your thoughts or experiences in the comments below - I do read them! See you next time."
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