In this episode Anna and Chandos talk to Ben Rimmer, a research assistant at Newcastle University and the work they are doing on the quality of life of people diagnosed with low grade glioma's. The Ways Ahead research project aims to understand more about the lived experience of people with low grade gliomas and how to improve their quality of life.
You can find out more about the Ways Ahead Research here
You can find out more about the research that The Brain Tumour Charity fund here:
Research into Adult Brain Tumours
Research into Childhood Brain Tumours
If you would lke to make a donation to enable us to continue to fund research into brain tumours you can find ways to donate here
You can vist our website here
In this episode Anna and Chandos talk to Ben Rimmer, a research assistant at Newcastle University and the work they are doing on the quality of life of people diagnosed with low grade glioma's. The Ways Ahead research project aims to understand more about the lived experience of people with low grade gliomas and how to improve their quality of life.
You can find out more about the Ways Ahead Research here
You can find out more about the research that The Brain Tumour Charity fund here:
Research into Adult Brain Tumours
Research into Childhood Brain Tumours
If you would lke to make a donation to enable us to continue to fund research into brain tumours you can find ways to donate here
You can vist our website here
Welcome to Let's talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from the brain tumour charity about what we're doing to halve the harm and double survival.
Anna:In this episode, we speak to Ben Rimmer, a research assistant at Newcastle University, and he talks to us all about a research project called Ways Ahead. I hope you enjoy. Welcome to the podcast. Ben, it's great to have you on. Could you just explain a little bit about to our listeners, who you are and what you do?
Ben Rimmer:Yeah, so it's a research project that's funded by The Brain Tumour Charity and we have the aim of developing a supported self management programme for people living with a brain tumour, more specifically, lower grade gliomas. So self management is the things that people can do to take responsibility of their own health and well being. But this isn't necessarily one individual's responsibility. Family and friends and healthcare professionals can have an important role in supporting self management, making sure that people have the right tools and information that can then be used in the home environment. So Ways Ahead has three research stages, we started with two reviews of the existing literature in the research space, the first one being quality of life in lower grade gliomas. To find out what do we already know about how people with low grade gliomas are impacted by the diagnosis and treatment, so that we can build on that and help us inform what we want to find out more about. The other review was on the characteristics and components of self management interventions. So what can we learn from what already exists? what's already being done well, and what can we use going forward in our research? The second stage of the project is three sets of interviews and this was the this was the main aspect of Ways Ahead and we included interviews with people with lived experiences of a low grade glioma, and we asked them about how they're impacted, how they manage any challenges that they experience in managing, how they're supported, what support they feel that they need, and how they want this support to be delivered and we spoke to 28 people, and I'll, I'll go into the findings a little bit later. Then we spoke to 19 family members and friends who support someone living with a brain tumour, and we asked them about how they feel the person they support is impacted and how they're impacted themselves. Again, how they manage how they help provide support. So what kind of support do they provide to the person that's living with the brain tumour, and what support they feel is needed. To round this off, we interviewed 25 healthcare professionals, including occupational therapists, oncologists, nurses, so we really tried to include the perspective of numerous different professions and with these interviews, we want you to find out what and how support is provided their role in supporting self management, and any challenges that they feel they experience on their end with providing the support. The third and final stage is some core design work and by that we mean that we're working with the people living with a brain tumour, family and friends and healthcare professionals, to find out more about what support is desired, and how they want this support to be delivered. So that we can understand from the end user, what kind of support they would like to engage with, and what they would want it to look like. So to do this, we put out a survey to find out whether people would like it online, face to face, and things like that and then after that, we had some group discussions with the people with the lived experiences, the family and friends and healthcare professionals, always trying to include all three perspectives. To look at how acceptable and feasible some proposed ideas are, based on what they've told us they would like
Chandos:And what are the short term goals of the research
Ben Rimmer:Yeah, so in the short and we want to raise awareness among clinical research and charity network communities about how people living with a lower grade glioma, and their family and friends are impacted by the diagnosis and its treatment, how they manage and what challenges they face, to really get a comprehensive understanding of what it's like, for these people living with a brain tumour and we want to share the findings in a way that's understandable to, to the people in with a brain tumour and their family and friends so that they can understand the impact and know perhaps how they could engage in self management and then the other short term goal is to raise healthcare professional awareness of the benefits of self management, so that we can help them see the value of promoting, encouraging and supporting self management amongst the people they support and then perhaps look at how the challenges that they experienced could be overcome.
Chandos:And moving into more long term plans, what's the long term goals around the reset.
Ben Rimmer:So in the long term, we hope to continue developing and move towards implementing a programme of supporting self management into routine care for people living with a brain tumour with an understanding of the perhaps the role and responsibilities across the person with the lived experience, the family and friends, and the healthcare professionals to understand how each person can be involved in engaging in self management and supporting it. So that for to ensure effective engagement and this has the potential to have quality of life benefits for people living with a low grade glioma, and such outcomes we're hoping to assess in there some follow up research.
Anna:Wow, that all sounds really, really interesting and just so valuable, potentially, if it all pays off for people who have been impacted, as well as healthcare professionals, and kind of loved ones as well. If you just kind of talk us through the findings, I'd assume after all that work that there's probably quite a lot. What have you found maybe if we break it down? We could start with what have you found from that talking to those people who have actually been impacted by a brain tumour?
Ben Rimmer:Yeah, yeah, we do have a lot of findings, I could think I could go on for quite some time. But we'll try and keep it to the key points. Certainly with the people that are living with a low grade glioma, they told us about their experiences with a wide range of symptoms and impairments such as fatigue, seizures, memory deficits, future uncertainty, but not only that, but the impact that these symptoms and impairments can have on their daily lives, such as with their ability to work, use public transport, or the impact it might have on their social relationships, for example. So it's, it goes beyond just that they might experience fatigue, but what that actually means to the person. In terms of the challenges that they might experience with self management, this included the awareness of and access to available support, whether these people had a strong support network, and any financial resources, and then their actual health status, or whether they're experienced in high levels of fatigue and that all had an impact on how effectively they can engage with self management and then finally, with these interviews, the things that people told us they do to manage living with a brain tumour included, monitoring their symptoms and emotions. So being aware of what it feels like to be fatigued, and then taking a break and making sure that they slow things down a bit so they can manage, manage more effectively, making use of support. So if they had a good support network, what can their family and friends do to help them to self manage, and then other things like acquiring information or equipment to help them and reinterpreting any negative consequences so not focusing on perhaps the prognosis of the illness but what positives can can be found?
Anna:Sounds really interesting and you mentioned there kind of, if they did have a good support network, how their family and friends could help out? What did you find from speaking to those family and friends?
Ben Rimmer:Yeah, yeah. So again, we asked the family and friends about how they're impacted themselves and large amounts of this was the emotional impact they experience and this included things like feelings of distress, future uncertainty. So not knowing. It could be short term decisions like whether they can book a holiday or long term decisions like deciding whether to have a child and so it really can have an impact across quite a wide range of aspects of life and then things like fear of progression, changes in the family dynamic, particularly if the person that they're supporting is quite fatigued, then there might be a change in who does more of the housework or the childcare and then if they're experiencing personality changes, what does that then feel like for the person that's living in the house with them. But in terms of the the ways that family and friends helped, or told us that they help people living with a brain tumour, this included using memory strategies, so like having a shared wall calendar so that they could both see health care appointments, for example, providing emotional companionship, or taking on more of that practical support, like the housework or the childcare. One of the main ones was helping with transport, because people due to seizures might not be able to keep their driving licence. So then the people, the family and the friends are involved in making sure that they can maintain their hobbies or work by helping with the transport and then finally helping to find information and arrange healthcare support. In terms of what support the family and friends desired themselves, they received a lot of support from their own networks. So yeah, their own family and friends and that included having the opportunities to talk to someone or get information from support groups of other family and friends that are going through a similar thing. So to share advice and experiences.
Anna:It's like a domino effect, right like the person living with a brain tumour obviously relies on their family and friends, but then those people then rely on their external group and it goes out like that, but I suppose not much support could really change unless healthcare workers get on board and realise what these desires are. So what did you find from speaking to them?
Ben Rimmer:Exactly so from speaking with the healthcare professionals, we learned that the perceived support needs or the support that they perceive that people living with a brain tumour need, it did align with the impact that was reported by the people living with a brain tumour from our interviews. So there was a bit of matching up that their health professionals understood that they might need help with fatigue or seizure management.
Anna:Yeah.
Ben Rimmer:But the available support varied by the location of where the health professional was across the United Kingdom, that the support that was available, typically included providing information needs assessments to make sure that any potential needs are identified, and simply being available for the person with the lower grade glioma, and where possible, making sure that family was integrated and had their own understanding. But again, this depended on the strength of the support network, because in some cases, this might not necessarily work for the person with the lived experience. But healthcare professionals experienced their own challenges as well with being able to provide the support and these kinds of challenges included, cooperation in amongst healthcare professionals, because if someone needs help from a physiotherapist, for example, and a psychologist or a speech and language therapist, are these people talking to each other, to make sure that they each have an understanding of this person and what is being done to support them in case there's any overlap? And then there's a challenge with help seeking, so if someone's not reporting that they have a need, then it's quite it's we've been told that it's quite difficult to then know how to move forward with that and that's with identifying the support needs as well and finally, how healthcare professionals think they should be supporting people to self manage, included providing tools and education to promote the independence and control of the of the individual and listening to their individual needs to develop specific goals. So it was really taken in the needs and desires of the person living with the brain tumour
Chandos:A theme that you talked about at the start of this interview was about like the collective responsibility and collective effort to to learn about lived experience but also empower change moving forward. So how are the brain tumour charity, helping move this trial forward in the direction that you've been talking about?
Ben Rimmer:Yeah, oh, the brain tumour charity have been massively helpful, I can't understate it. So before each interview, you get an information sheet to tell you about what is involved in taking part and then, during the interview, we follow something called a Topic Guide. So to make sure that we kind of cover each area that we're interested in, and how the Brain Tumour Charity was involved in that to start with was showing a group of people these documents and making sure that the language we used was understandable and appropriate and making sure that in the Topic Guide that we'd covered a wide range of topics that people felt were important, and they wanted to talk about. So without that, we might have missed the mark, or not hit the right notes. So that was really important and then also with the project website that we've got, making sure that people could put forward their opinion on whether it was easy to navigate and understand and whether looking at that the website, whether they could feel like they could actually get something out of it and again, whether the language that was used was appropriate so that was in the initial stages. But that yeah, the the charity has been fantastic. We did most of our recruitment during the challenges of the pandemic. So while we, we had some collaboration with NHS, like hospitals across the UK, there was well, obvious delays and setbacks with that due to the pandemic. But instead of that being a limitation, we collaborated with the charity and went, how can we work with your, like research involvement networks, and the people that are invested to still engage people in this research, and my God, we got an enormous response. So that was, that was fantastic, we got a great level of like interest and engagement and that's what helped us to still reach the numbers that we got to really still deliver some high quality research despite the setbacks.
Chandos:You've spoken about some of the findings that you've you've already uncovered, and, and discovered, through your research with, with people with lived experience of having a brain tumour, how does someone like yourself work with the charity, when the research is ongoing, and moving forward all the time and you're finding out new stuff?
Ben Rimmer:That's a good question. So when, when we had some initial findings from the interviews, we we went back, and we said we shared these with people, and when these do these align with the kinds of things that you might think that we could find? Have we found, perhaps, the experiences of a select few, and these may not be representative is there's something we're missing? Are we get in the right end of the stick in terms of how we're interpreting these? So then, when we progress with the analysis and move forward towards the write up, that we are hitting the right mark, obviously, in line with what is coming out of the interviews,
Anna:And it sounds like there's been so much hard work put into it already and obviously, it's ongoing. So I guess the question is, just what's next kind of how is it going to move forwards? And if the people listening wanted to stay updated on the research how would they be able to do that?
Ben Rimmer:Yeah, so as I said, we've got a project website, at research.ncl.ac.uk/wayahead and that's constantly updated with the ongoing work. There's numerous publications in the works, and recently presented findings at an international conference. So we're trying to make sure that finding and reaching, like worldwide research and clinical communities, because some of this research and findings are happening for the first time in this space, so making sure that people around the world are aware of this and can build on it. But also, on this website we've had we have lay summary of findings so that people without the scientific background can still try and understand what it is we found.
Anna:So just to kind of wrap it up, I'm sure you've been very busy and this has taken up a lot of your headspace but just curious find out if you have any other kind of trials planned in the future.
Ben Rimmer:Yeah, yeah, so we we do hope to apply for more funding in the future to come continue developing this prototype, if you will, of a supporting self management programme, and will continue to have close involvement from people with lived experience the family and friends and the healthcare professionals to ensure that what we're doing works for everyone and this will include updating the prototype, following any feedback, and then developing and perhaps pilot testing this programme with small samples to make sure that it's still seen as something that is possible and it's feasible and acceptable to everyone involved when it is actually used rather than just what are they think about it as an idea. So this will help us to understand what might work well, and what could be improved moving forward.
Chandos:Well, thank you so much, Ben, for joining us today. I think it's been really informative for both me and Anna, because I think when you look at research, I tend to think about numbers and stuff and I get always confused and overwhelmed and so it's nice to hear about research that's not, it's about the person and about the lived experience and it's hard to kind of create that into tangible information that someone can take away sometimes because everyone is different. But it's been really informative to hear your, your take on it and what you've learned and what you're you're hoping to do with the research so thank you.
Ben Rimmer:Yes, no, and thank you, it's, it's great to have this opportunity to share with different audiences, like I was at a conference, but that might be a completely different audience to what this might reach, so it's no it's fantastic.
Anna:Great to get the word out there and if anyone's interested in any other kinds of research that The Brain Tumour Charity is funding, they can always check out our website, which is www.thebraintumourcharity.org.
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