‘A lightbulb moment’: carers’ experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit

‘A lightbulb moment’: carers’ experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article ‘A lightbulb moment’: carers’ experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit Eneida Mioshi, Sue Heal, Thando Katangwe-Chigamba This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4281327/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 08 Jul, 2024 Read the published version in BMC Neurology → Version 1 posted 10 You are reading this latest preprint version Abstract Background: to explore carers’ experiences of behavioural symptoms in Motor Neurone Disease (MND), before and after using the MiNDToolkit, a novel online psychoeducational intervention to support management of behavioural symptoms (BehSymp) in MND. The study also investigated carers’ views and acceptability of MiNDToolkit. Methods : A qualitative process evaluation of carers engagement with, and acceptability of, the MiNDToolkit conducted using semi-structured interviews with carers (n=11). All interviews were audio-recorded, professionally transcribed verbatim and analysed thematically. Results : five themes were identified: 1) In the dark – carers’ experiences and reactions to BehSymp; 2) Others can see: the role of HCPs in identifying symptoms – and perceived opportunities for carers to receive support; 3) Shedding light: carers implementation and perceived impact of the MiNDToolkit content; 4) Acceptability and carers’ engagement with MiNDToolkit; 5) future implementation. Carers’ experience of BehSymp was particularly distressing when symptoms were apparently out of context. MiNDToolkit appeared to support learning that BehSymp were part of MND. Content resonated with carers, who reported learning about the full picture of MND, which led to acceptance and use of newly learned strategies. Engagement with the platform was good, with varied input from HCPs. Greater and nuanced involvement from HCPs seem important to support management of BehSymp. Recommendations for a full-scale trial emerged, including adding a paper booklet to accompany the intervention and creation of new modules on emotional lability, changes in relationships, and transitioning to a care home. Conclusions : MiNDToolkit was acceptable to carers overall. Recommended improvements should be actioned in a full-scale trial. MND ALS FTD carers behavioural symptoms neuropsychiatric symptoms Figures Figure 1 Introduction Caring for someone with Motor Neuron Disease (MND) is multifaceted and emotionally demanding; care provided is varied and progressively more intense, including need to understand the progression of the disease, managing competing tasks and external resources and trying to maintain normality 1 . This is because MND is a progressive neurodegenerative disease characterised by degeneration of upper and lower motor neurons, leading to muscle atrophy, loss of function 2 and death. As such, people with MND (pwMND) become progressively dependent on others due to the deficits associated with the changes in various body systems 3 . Most of the care is provided by family members, usually a spouse or child 4 , with or without the help of paid carers or others. Despite the major role that family members have in providing care in MND, there is very limited evidence on how to best support carers of PwMND 5 , in particular when complex symptoms associated with frontotemporal dementia (FTD) are present. The existence of behavioural symptoms (BehSymp) in MND, such as disinhibition, apathy, obsessive behaviours, and hallucinations, have been described for many decades 6 . However, MND’s link with FTD has been reignited more recently with the identification of the role of the C9orf72 gene 7 , 8 , which brought MND and FTD alongside a clinical, pathological, and genetic continuum. Since then, the development of assessments to support identification of cognitive and BehSymp has strengthened, and the international ALSFTD diagnosis criteria has been revised 9 . Efforts have been made to ensure regular assessments are included in MND clinical care, but these are still not consistently conducted in many specialist MND services, though healthcare professionals (HCP) show increased awareness 10 . Assessments of non-motor symptoms are of great relevance for not only for disease management, but especially for carers. BehSymp have been shown to be associated with carers’ perceptions of loss 11 , and BehSymp are recognised to underpin higher rates of carer burden in many countries 12 – 15 . Evidence on clinical management of BehSymp is nascent. A Danish study investigated an online peer-support group for carers, showing good engagement with the intervention but low completion rates 16 . A recent national randomised feasibility trial of the MiNDToolkit showed promising results 17 , and strong relevance for HCPs 18 . As such, the present study aimed to investigate MiNDToolkit’s acceptability by carers. This study was conducted alongside the MiNDToolkit feasibility trial. Here, we undertook a qualitative process evaluation to explore and understand carers’ acceptability and application of the MiNDToolkit intervention, and their experiences of behavioural symptoms prior to using MiNDToolkit, and after. Materials and Methods Design A qualitative process evaluation of carers’ engagement with and acceptability of the MiNDToolkit conducted using semi-structured interviews 19 . Ethical approval: London Queen Square Research Ethics Committee (19/LO/0692, IRAS260290). Study setting The MiNDToolkit study (ISRCTN 15746123), a randomised controlled feasibility trial, was conducted across 11 sites in England and Wales between July/2021-March/2023. All participating sites including Hospitals, MND Care and Research Centres, Community teams and Hospices, had advanced MND care set up. The MiNDToolkit MiNDToolkit is a complex intervention for the management of behavioural symptoms by carers 17 . The intervention consists of tailored online psychoeducational modules and strategies to manage reported symptoms. Learning and strategies are reinforced by trained HCPs during appointments. Participants and recruitment Eligible carers (family carers, relatives or live-in professional carers) had regular contact with a person diagnosed with MND-FTD or MND with cognitive or behaviour impairment. All carers, allocated to the intervention arm during or after the intervention period (former controls), were invited to take part in the mixed-methods evaluation. The process evaluation results for HCPs have been reported elsewhere 18 . Data collection Eleven individual semi-structured interviews were conducted. Carers were asked about their understanding and experiences with symptoms of MND, and how they managed them before MiNDToolkit. To further explore engagement and acceptability, carers were then asked about their experience of the MiNDToolkit Online Platform and HCP support. Carers were also asked about their perceived impact of the intervention on the management of symptoms. Interviews were guided by a topic guide and conducted virtually (TKC) on MS Teams, audio recorded, and professionally transcribed verbatim (Topic guide, Appendix-1). Analysis Interview data were inductively analysed using Reflective Thematic Analysis 20 to understand carers experiences. The analytical process involved an initial familiarisation with the data followed by inductive coding by two researchers (EM, TKC). This was followed by discussion and analysis meetings where a former carer of a spouse with MNDFTD (SH) joined the two researchers (EM, TKC) to develop an understanding of primary concepts from the data and explore interpretations to identify key subthemes and themes. Results Eleven carers were interviewed between May 2022 and June 2023. Demographic and engagement in the intervention are described in Table 1 . Table 1 Carers’ characteristics and details of their engagement with MiNDToolkit (n = 11). Characteristics Carer age (Mean and SD) 63.18 (6.42) Carer gender 9/11 female 2/11 male Relationship with the PwMND 10/11 spouse or partner 1/11 parent Hours of care provided per week 1–4 hours/week 3/11 15–22 hours/week 1/11 31–49 hours/week 4/11 50–99 hours/week 2/11 100 hours or more/week 1/11 What was the official diagnosis given to the person with MND ALS 4/11 Bulbar onset or Progressive Bulbar Palsy 2/11 Progressive Muscular Atrophy Primary Lateral Sclerosis 1/11 0/11 MNDFTD 3/11 Not sure 1/11 Engagement with MiNDToolkit Engagement with the MiNDToolkit platform (3 month-period) Number of times logged in during intervention phase (Mean and SD) 20.18 (9.65) Initial allocation of study arm 10/11 Intervention 1/11 Control Carers asking to use the MiNDToolkit beyond intervention or Control period 8/11 HCP reinforcement Yes, 7/11 Online only, 4/11 Five themes were identified (Fig. 1). Theme 1. In the dark: carers’ experiences of and reactions to behavioural symptoms (Fig. 1) 1.1. Seeing but not understanding Carers’ recollections and experiences of when BehSymp were first noticed in relation to the time of diagnosis varied, with some first noticing the symptoms prior to diagnosis, while others after diagnosis was made. Carers gave examples of a range of behavioural symptoms: inability to understand another person’s perspective, lack of insight, rigidity, eating changes, and hallucinations. “Well I didn’t actually associate it with MND. This was quite a while before he was diagnosed. He started having an obsession that we had bedbugs in the house and that he had been bitten. Anyway, I spoke to his GP about it […] and the GP arranged to come up and see him. They had given him some [inaudible] cream which takes away the itching and the sensation that he’s got, bugs crawling on him, and that seems to have done the trick. But every now and again he will still bring it up. He might have a nail scratch that, you know, he’s scratched himself during the night and then he’ll say, ‘Look, I’ve been bitten.’ And he’s actually produced things in his hand and said, ‘Look, I’ve caught one,’ and it’s been a piece of fluff .” Carer 02 describing an example of hallucination “ An example is like if we’re both getting dressed and he’s dressed, he’ll want to put his coat on long before we’re ready to go out and he expects me to stop what I’m doing to come and put his coat on, even though he’s not ready. Or if he’s looking for something, or if he wants his nails done and I’m doing something and I stop whatever I’m doing to attend to it, that’s what I mean by that selfishness. Well, he would have never done that before, he has no consideration for whatever I could be doing”. Carer 01 describing an example of rigidity “I mean I would make, I make home made soup but when he was having soup every day, he wouldn’t eat it, he would insist on having a shop bought soup, not least of all because he wanted to know how many calories were in everything he ate.” Carer 09 describing an example of eating changes “He gets obsessed about silly things like he thinks the next door neighbour put a new fence up and he’s convinced, even though he’s housebound, he’s convinced that that neighbour has stolen land and moved the fence closer onto our property.” Carer 02 describing an example of delusion A shared experience reported by most carers was the inability to link the BehSymp to MND. Carers reported observing behaviours that did not make sense or were out of character. Although the changes were noticeable, carers could not understand the reasons behind unusual reactions and behaviours from the PwMND. This lack of understanding led to carers’ confusion, and constant attempts to try to make sense of what was happening. “The changes in the personality was there, in behaviour, but then I thought it was, I put it down to other things, i.e., maybe depressed or there were times when we were socialising with friends and he would drink. And he normally, he would drink and it’s just the way it would affect him, and so I thought, “Oh my God, there is a problem with the drinking.” But there wasn’t because I think it’s just whatever was going on.” So before the diagnosis, I knew that something was wrong but I couldn’t put my finger on it.” Carer 01 Reflecting back, some carers noticed that physical deficits associated with MND affected the expression of behavioural symptoms, e.g., when bulbar symptoms were present and inability to verbally communicate disguised symptoms. “He’s always been very philosophical. I think at the moment communication is very difficult because there’s no speech but he uses a phone with an app on it, predictable app, and various other things to help him communicate. But at the moment because the cognition isn’t so good and because the fine motor skills are not so good, typing and reading have become very difficult. In fact he can’t read at all and he can’t write, he’s lost his fine motor skills, so in his hands.” Carer 03 1.2. Carers’ emotional reactions to the changes and symptoms: sadness, anger, disappointment The lack of recognition of behavioural symptoms made carers feel alone, as they did not want to share their fears and worries with the PwMND or felt they had to shoulder the impact of the changes as the PwMND was unable to share this load. Even after learning about symptoms, some carers felt guilty and disloyal to the pwMND by having to talk about these difficult behaviours, even if the PwMND was not present in the room. “Well I suppose I was feeling guilty about sort of sharing with other people, you know, people like yourself or whoever is involved in it, sharing negative things about him.” Carer 09 Carers reported sadness and loss of the person that they used to be, not only in relation to physical abilities, but to their cognitive abilities, which they found the most difficult. “And I think it’s the psychological side of the condition that I find hardest to cope with. The physical side, I mean to a great extent you can get your way around a lot of the physical, although obviously it will get harder. But a lot of the mental stuff is quite difficult, it is quite challenging […] And it’s just that you realise it’s not – although it’s the same person, some of the sharp comments or different things aren’t the comments that you would have had previously.” Carer 10 BehSymp negatively impacted on carers, who reported that this was not what they had expected of a terminal illness. The unnamed experiences of BehSymp also led to other negative feelings such as pain and anger. “Well it was kind of like unknown territory really. You know, you’re dealing with someone that you know very well but behaves in a way that you know is not their usual behaviour. And also as well, you know, [name 2] is someone who I care for and I love who has got a terminal illness, so there is guilt, there is anger, there is all of those emotions all rolled up. And then you’re dealing with someone who at times seems unreasonable and you can’t respond in the normal way you would do, so confusion […] Confusion and anger and upset and all those emotions, they’re all – it’s a very jumbled, you go from one to the other. It’s like there are three emotions, you jump from one to the other and then you think in between and then you have to approach the whole thing a different way, each time, yeah.” Carer 01 Relationships became strained as some carers interpreted the PwMND’s behaviour as intended actions towards them, not symptoms. For example, carers reported that the PwMND had become unreasonable and selfish, when they may have lost their ability to empathise and read other people’s emotions. Disappointment was also reported, especially when lack of empathy was present. “You know, being unreasonable, being selfish to the point of not understanding. Because we’re all selfish but we understand when we’re being selfish. But when someone is being totally selfish and don’t understand it, that’s really hard, that’s a hard one to deal with when you want things your own way all the time or you want things done now because that’s what you need, your need must be met straightaway, regardless of whatever else I’m doing or involved with, you know?” Carer 01 Theme 2. Others can see and support: the role of HCPs in identifying behavioural symptoms - and perceived opportunities for carers to receive support 2.1. Professional-led identification of behavioural symptoms and support Carers related several instances where the identification of behavioural symptoms were led by a member of the MDT. These were either directly via a conversation, after the result of a cognitive assessment, or triggered by genetic testing which would have indicated that the MND phenotype was related to a genetic form associated with frontotemporal dementia. “Because the motor neurone disease nurses had made me aware of what the frontotemporal dementia would bring, how it would manifest itself. So you know, when you hear that and then you start putting things together, you think ‘OK, yes’.” Carer 06 “Yes. Well as the neurologist explained to me, she said, it’s like, she said there are lots of things which are still there. She said, ‘Look, with [PwMND]’, she said, ‘It’s a frontal’, and she said to me, ‘It’s like the captain of the ship has left so everything is a bit of a muddle’.” Carer 01 Against the difficult context of a rapidly progressive condition such as MND, carers reported that without intervention from the professionals, they may not have realised that they needed help with non-motor symptoms or expressed uncertainty as to which type of support they required. Carers were therefore particularly positive about instances where professionals helped them understand behavioural symptoms and stepped in to provide support for carers. Some professionals highlighted that the carer needed support and referred to counselling or took the time to explain the behavioural symptoms in MNDFTD. “When the dietician, as I said, she rings every five weeks I think it is, and I always answer the phone and she always says, “How is it going [carer’s name]? How is [PwMND}, has he been good?” And you know, “Have you tried that?” I said, “He’s still losing weight.” “Have you tried this? Have you tried that?” That’s really helpful to me.” Carer 05 2.2. Services are not designed to support carers Despite some positive experiences with HCPs described above, many carers struggled with lack of support. Carers reported not having the experience of being told by HCPs that non-motor symptoms were part of MND, prior to the MiNDToolkit. Carers alluded to the limited opportunity for open discussion with professionals in the current service design; with some carers feeling excluded from the appointment. At times, communication played a big role in misunderstandings, with carers feeling that they were ‘abandoned’ by the team. Telephone contact was also not viewed as proper support, being deemed as too impersonal. “And I think the other thing is, is that whatever is told to you in clinic, you only – you don’t, a) it’s all about the patient, not the carer, and also […] it’s very much, it’s from a clinical perspective, so it’s the medical side of the condition, not, just not so much the psychological side of the condition. And I think it’s the psychological side of the condition that I find hardest to cope with. The physical side, I mean to a great extent you can get your way around a lot of the physical, although obviously it will get harder. But a lot of the mental stuff is quite difficult, it is quite challenging.” Carer 10 Carers felt that current services were focused only on time with the PwMND, with some carers even reporting that they did not feel they had a right to receive support from the NHS and felt that they should be coping on their own. Even when professionals appropriately recognised the carer’s need for counselling, and this was set up, it still left the carer feeling ‘like a fraud’ for having received help. “’Just phone me any time’. but I just know how busy these people are [HCPs] and I just feel I should be able to cope with this on my own, so I don’t contact them. I know that for the NHS to provide help for carers, they haven’t got the funds to do that, so it’s a very difficult call but I really think there’s a need and perhaps the coffee morning will be our answer if we try it again because that’s not financially dependent on the NHS, that’s MND Association that does that.” Carer 05 Outside of NHS services, some carers reported receiving informal support from volunteers from the MND Association, family and friends, which occurred alongside formal support. But for others, these informal channels felt like their only source of support. Thinking ahead, some carers decided to take part in research because it would offer them an opportunity to receive greater support from their MND team. “But just even if it was for me to pick up the phone to one of the other carers and say, “This is happening, you know, is this normal?” I feel that I could probably do that rather than pick up the phone and speak to somebody like [HCP], who I know are really, really busy people. If it’s another carer I think you can be a bit more informal and, I don’t know.” Carer 05 “From a very selfish perspective, felt that if we were actually involved [in research] we’d probably get more help because we would know the people more and feel – if you’re involved, we felt we’d be able to ask for help more than if you’re – if all you’re doing is going along to an appointment every four months, you have no relationship.” Carer 10 Theme 3: Carer implementation and perceived impact of the MiNDToolkit content 3.1. The full picture of MND resonating with carers Carers reported that, prior to MiNDToolkit, they thought MND to be a ‘physical disease’. As such, behaviour symptoms were perceived to be out of context. This gap in understanding often led to carers attempting to rationalise with the PwMND, which lead to arguments. “I found it really, really hard to be honest because the natural reaction is to try and explain to the person, ‘No, you’re wrong, you know, we haven’t got bedbugs and they haven’t – the neighbours haven’t stolen our land.’ And it ends up in an argument because you can’t kind of explain to them that what they’re thinking isn’t right. And it’s only since doing the MiNDToolkit that I’ve kind of realised it’s not worth trying to correct them. Just, you know, just accept what they’re saying and just maybe distract, we change the subject.” Carer 02 With MiNDToolkit, carers acquired understanding that those BehSymp were due to MND, which in turn alleviated the uncertainty of the root cause of the distressing behaviours. Carers were able to put together what they had observed, with the information provided by their nurse, and felt it ‘all makes sense’. Additionally, they felt that MiNDToolkit gave legitimacy to what was happening, because there was scientific evidence in explaining the difference between apathy and depression. One of the carers found MiNDToolkit resonated particularly well with them, given that the PwMND they cared for had had BehSymp due to a pre-existing condition. “Oh crikey, where do I start? It was like a light bulb had gone off, literally and there was so many things as I was going through the modules and I was thinking, “Wow, yes, that’s happened to me, that’s happened to us.” And, like I say, it was a real revelation to know that all these things that we’d been going through were actually part of the disease and it wasn’t my partner becoming more obstructive, more awkward, more combative, as something in addition to MND, it was actually part of MND. And, yeah, and the hallucinations as well, you know, it kind of all made sense and it all fitted into place, yeah.” Carer 02 Carers felt empowered to be able to talk about symptoms, using new terms learned via the platform. A sense of control could also be noticed when carers felt prepared for potential symptoms in future. “They were helpful because I hadn’t – at that stage, the very fact I could talk to you about it, I wouldn’t have been able to talk to you about it if I hadn’t watched the video because I wouldn’t have known.” Carer 10 3.2. Full picture leading to validation and acceptance The MiNDToolkit also validated carers’ experiences. Videos from the modules provided reassurance that other families have had similar struggles, and that options for help were available. Validation of their emotions supported normalisation of their reactions, while reassuring carers that they were doing the best that they could. “I think to know that other people have struggled the same as I’m struggling, that it’s not a weakness that I’ve got, other people are struggling with the MND, with the illness itself, and the people that they love that have got the illness. That there is, when they get, when the person with MND gets really bad, there is help there if needed”. Carer 05 Increased knowledge and understanding about BehSymp appeared to facilitate acceptance of them as part of MND, which leads to changes in carer’s own behaviours and reactions, as well as using strategies, when BehSymp occur. Acceptance of BehSymp was also demonstrated by carers reflecting that the PwMND cannot help behaving in a new certain way, that behaviours may not be rational choices, and that their new approach is to use the learned strategies rather than arguing back. “Well now I just accept that he does have these thoughts and I don’t get upset with him myself, which I would have done previously. And I don’t contradict him, I don’t argue back, I just accept what he’s saying and kind fall short of doing any – offering to do anything about it because obviously I can’t do anything about all these things that he’s thinking. But I will try and - I’ll try and change the subject onto something else.” Carer 02 3.3. A new approach: carer able to reduce conflict, feeling upskilled and sharing new learning Strategies suggested by the MiNDToolkit added new skills to carers’ portfolios, making them feel supported and equipped. This learning enabled different actions and reactions, making things easier for the carer by reducing conflict. Carers also learned to phrase things differently, to reduce resistance from the PwMND in decision making processes. “I think the main thing is that you suggest in the Toolkit, this is just strategies that you can employ. And I think having those strategies as a kind of crutch, something to lean on, something to look up, it kind of makes you feel that you are supported in a way because you’ve got a way of dealing with it. Rather than, you know, if you’re just on your own, you just kind of look at that person and you’re dealing with them as though it’s somebody who hasn’t got any behavioural issues and there’s a tendency to kind of react in the moment whereas, you know, if you’ve got that Toolkit, you can look at various different ways that you could react.” Carer 02 But some strategies were not always applied as intended by MiNDToolkit. A couple of examples demonstrated that carers may have understood that a certain behaviour reflected a symptom, e.g., ‘rigidity/lack of flexibility’ (part of MiNDToolkit) - but then applied a strategy of ‘shouting’ to try to overcome the symptom of rigidity (not part of MiNDToolkit). Most of the time, though, carers demonstrated application of the learned strategies during interviews, for example ‘Prepare and Increase Awareness’, through sharing the learning with others. “And the other thing which I’ve started to do is, yeah, is to tell friends and family about the changes beforehand […] To tell, let everyone know beforehand that there is a slight change in personality. So I wasn’t feeling the pressure it brought, so in social occasion.” Carer 01 Theme 4: Acceptability and carers’ engagement with MiNDToolkit We identified some key factors in carers’ engagement with the intervention. 4.1. Timing for using MiNDToolkit For some, the key motivation to engage with the MiNDToolkit was a desire to prepare for future symptoms and/or a need to understand the causes of behavioural changes. For these carers, early access to the MiNDToolkit was important to equip them to deal more confidently, and better, with the behavioural changes associated with MND. “I know some people think ignorance is bliss, but I like to know more information so that I’m prepared. So for me, personally, I would rather know well this might happen or this could happen. And just knowing that it may happen then I can prepare myself.” Carer 05 Some carers felt MiNDToolkit arrived too late, when they had already learned to adapt to the situation. As such, most carers reported that accessing MiNDToolkit early in the post-diagnostic phase would have been more useful. However, others felt an early introduction might be overwhelming whilst they were still coming to terms with the diagnosis. A lack of readiness was generally associated with anxiety and fears. Some carers reported anxiety in knowing about things that might happen, which at times led to avoidance in engaging with the platform. Others reported that they knew they needed to engage with MiNDToolkit, but felt they needed to be in an emotionally stable place to take things in. “I think that maybe about a month after diagnosis because I know at the time [PwMND] was diagnosed, I was on the internet, I was looking through the book and reading up as much as I possibly could about it to know what we could expect in the future and how it might progress. But then as time wears on you kind of put all that to the back of your mind and just focus on coping. So I think at some point initially, maybe within the first couple of months, the Toolkit might – it might be good then to introduce it whilst somebody is still in the frame of mind that they want to know as much as they possibly can and at least then they’re prepared for the behavioural and mental changes ahead of time. You know, they know about it from more or less the get-go.” Carer 02 Overall, it appeared that a gentle introduction by HCPs, responding to the carers’ cues would be the most appropriate guidance for the timing. For some carers with initial perceptions that they did not need support from the MiNDToolkit, timely intervention and encouragement from trained HCPs was highlighted as vital for engagement. “Initially when I just got the information through the post saying, “Do you want to do this?” My initial reaction was no, partly because I thought can I be bothered? Do I need to do it? I wouldn’t have done it had the OT – had we not had that discussion about him being fixated on this bit of equipment and her saying to me, you know, it was just, I suppose fortuitous that it happened at the same time as I’d received the information about it, you know. And she said to me, “Have you received the information about this thing? Do you want to do it?” And I said, “Yes, I have but no, I probably won’t do it.” And she said, “I absolutely think you should because it will help you understand why he’s behaving like this. So you know, until that point, if we hadn’t had that conversation, I possibly wouldn’t have done it.” Carer 09 The stage of the disease itself was also factor in the timing for carers’ engagement. Progression of the disease whilst having access to the MiNDToolkit was seen as an enabler as carer felt they had more experience and related better with the content (carer who continued with intervention after end of the study). For others, the increased disability and greater needs of the PwMND meant that carers could not engage with MiNDToolkit due to reduced time. Other external factors played a role in engagement, such as carers’ own health state or other family members’ needs. “So there was the first lot of modules that I did over three months, which actually I didn’t quite get to the end of because various other things were happening. I had my own health issues and everything and so I didn’t quite get to the end. And then suddenly the three months was up.” Carer 09 4.2. Using the platform - ease of use Carers found the platform modules to be accessible as they were short, could be paused, and could be fit around other duties, including nighttime hours. The platform was felt to be straightforward, and reminders were useful for continued engagement. Its online nature was also seen as a positive aspect for repeating things, and for continued access. “Whereas the MiNDToolkit, it was in nice, easy, bite size portions, if you like, to coin a phrase. But yeah, nothing took more than sort of like 10,15 minutes which was great for me. So I could do in between, you know, household jobs or I could even access it at work and do a couple of modules during my lunch hour or in a break. So it’s that kind of, you know, short, only about five, 10 minutes long which makes it more accessible I think”. Carer 02 “But as I say, I have now done it all and some of it several times, so yeah, it was certainly worth doing so I’m pleased I did it. I was very glad to get the opportunity to do it again, or to go back and revisit it, and I certainly found it beneficial because there was, as I say, well all the cognitive changes were things that I didn’t know about and wasn’t expecting. And although I had noticed changes, I certainly, at that point, hadn’t connected them or hadn’t realised other people did that sort of thing as well, you know.” Carer 09 Some carers took the intervention into new directions that had not been intended at the conceptual phase. For example, they shared their login with their children, or even showed the content to the PwMND. “So I gave it to him and said, “Look, this is,” because he couldn’t understand why things were happening. And I said, “Well look, this is why this is happening, look at this three-minute video on empathy and apathy.” And he watched it and felt so much better because he had seen it actually explained to him.” Carer 10 “Because I sort of thought it might be useful for my son to have a look at it because that’s what I – yeah […] you know, the explanations I thought maybe would be useful for him, I could get extra, yeah.” Carer 04 4.3 Reinforcement by HCPs Carers perceptions of their need for reinforcement by HCPs were varied. Those who received reinforcement seem to have appreciated it coming from a professional with whom they already had a relationship of trust, or whose background training were more fitting in the carers’ view. Some who did not receive reinforcement wished they had had, while others reported that they do not think they would have needed it. “I’ve discussed it with are the Occupational Therapist and the Neurology Nurse. They’re probably the only two people I have talked to about it and they have ex – you know they come here and see him, they’ve experienced some of his behaviour. I suppose with other people, I don’t know, like Speech Therapist, Physio, etc, they see him as a patient and I’m normally there, so it’s not a situation where we’re sitting having a discussion about, you know, it hasn’t come up. It’s not part of their remit anyway I suppose, you know, they’re doing this, whatever they do. So it’s not that I’ve chosen not to discuss it with them, it’s just not been appropriate.” Carer 09 Theme 5: Future implementation All carers interviewed had suggestions for improving MiNDToolkit, demonstrating strong engagement and keen interest in promoting access to others in future. 5.1. MiNDToolkit Content Carers had excellent suggestions for new modules that could be added. These included information on emotional lability, changes in relationships, and transitioning to a care home. One carer suggested including more explicit examples applicable to PwMND with bulbar symptoms. 5.2. Delivery/Hybrid Carers were unanimous that the delivery of MiNDToolkit should be maintained as hybrid, combining online and face-to-face learning from HCPs, but suggested that reinforcement could be an option based on the carer’s needs and wishes. “I think initially online was fine because […] when you do it online, you can do what you’ve got time for and then go back, whereas if you were face-to-face you wouldn’t have that option […] But I think perhaps do it in two parts, do part online and part face-to-face”. Carer 05 5.3. Expansion, and what did not work so well Carers wanted to encourage other carers to use MiNDToolkit in future. They also wondered if volunteers could be involved in MiNDToolkit, through reinforcement. “I mean I would certainly encourage other people to do it. And sort of whether it’s worth trying to encourage the medical, the health professionals to encourage carers as well as just sending out a paper, you know, invitation.“ Carer 09 But not all elements of MiNDToolkit were well accepted. Some carers felt that they were not IT savvy and would have preferred an HCP-based delivery, with paper resources. Others would have liked the flexibility to navigate the modules as they wished – the delivery was offered in a certain order. The flexible navigation can be set and taken forward in the next MiNDToolkit study. Discussion Our study confirmed that carers’ experience of BehSymp can be emotionally distressing, in particular when out of context and perceived as personal reactions - and not part of MND symptomatology. By using MiNDToolkit, however, carers reported learning and making sense of BehSymp, understanding that the full picture of MND goes beyond motor deficits. This process supported acceptance and management of BehSymp and was appreciated when accompanied by HCP support – even though some carers interacted with the MiNDToolkit intervention solely via the bespoke platform. Carers’ challenges in dealing with BehSymp in MND are compounded. Carers not only have to deal with known triggers of emotional distress in MND, such as a threatened future and keeping up with multiple changes 21 , but they also experience behaviours from the PwMND which are not consistent with the person they know 22 . In our study, rigid and obsessive behaviours made routines inflexible, disinhibition caused embarrassment, and lack of flexibility led to conflict between the carer and the PwMND. Relationships appear to become strained, with greater sense of loss 23 . Indeed, our findings align with other studies where BehSymp were identified as key factors influencing carer burden 12 – 15 . The importance of having a MND professional involved in an intervention such as MiNDToolkit was highlighted by the majority of carers, even by those who did not discuss MiNDToolkit content in detail. HCP involvement appeared to lead to greater validation of the intervention, making it legitimate – especially in the context of other online/social media resources, where some carers feel that these may not be trustworthy. It is interesting, however, that some HCPs involved in the study worried that highlighting challenges with behavioural symptoms would be burdensome to carers 18 . Having HCP involvement in the programme also seemed to strengthen the connection of the carer with the MND service involved with the PwMND who they provide care for. As services are mostly focused on the PwMND, carer engagement with MiNDToolkit opened or reinforced a connection between the HCP and the carer, creating safe spaces for carers to discuss their own concerns and that may not normally feature in regular MND appointments. This triangulation seemed to be valuable to carers. Indeed, other MND studies showed overwhelming positive responses from carers 24 in engaging with therapies and HCPs in communicating 25 well and supporting their experience of caring for a PwMND 21 . An important aspect of the psychoeducational intervention was the involvement of the trained HCP, which varied per site 18 . Carers unanimously reported that the intervention should remain hybrid, but not all were certain that they would have wanted regular HCP input – while others would have preferred greater HCP input. It appears that a modulation of HCP involvement would be ideal, with HCPs responding to carers’ need in a dynamic way. Nuanced communications, tailored for the carer, seems to be a good way forward in response to carers’ experiences reported in MiNDToolkit and the scientific literature 25 . MiNDToolkit appeared to be well accepted by most carers, with some expanding its reach by providing the platform login to other family members or even showing modules to the PwMND. While these steps were not intended or described in our research protocol, they seem to suggest that carers found the content helpful. Accessibility through the online platform was confirmed via unusual hours of use, e.g., very early or very late in the day. Unlimited online access seems to encourage carer participation, as it offers flexibility and carer control; this enhanced online accessibility has also been shown in other online interventions for carers 26 , 27 . Carers were also keen to provide suggestions on how to enhance the MiNDToolkit, most noticeably in relation to the role of the HCP as discussed earlier. Other more practical suggestions were also mentioned. For example, carers asked for new modules on mood lability, relationship changes, and transitions in care, as well as an accompanying paper version of the content to increase accessibility and as a memory aid, similar to HCPs’ request 18 . These can be addressed for a future trial. Limitations of our study include its online nature. As MiNDToolkit was transformed to be a full online intervention because of the COVID pandemic, access was restricted to those willing to engage with an online intervention. Most carers were female, thus limiting our interpretations of MiNDToolkit’s acceptability by male carers. However, strengths in our study include a diverse ethnic cohort, and participation high completion rates. In summary, the MiNDToolkit psychoeducational intervention seems to be acceptable by carers of PwMND with additional behavioural symptoms. The intervention helped carers expand their understanding of MND, supporting acceptance of symptoms and enabling carers to modify their own behaviour and apply newly learned strategies. Figure 1 Themes and sub-themes identified in carers’ interviews exploring experiences of behavioural symptoms before and after MiNDToolkit. Declarations Ethics approval and consent to participate : London Queen Square Research Ethics Committee (19/LO/0692, IRAS260290). All participants consented to participate in this research project. Consent for publication: as per ethics approval Availability of data and materials: Due to the sensitive nature of the interview data, interviews have not been deposited in public archives. Please contact the corresponding author if interested in developing research collaborations. Competing interests: EM and TKC were funded by the MND Association. EM was funded by the NIHR Clinical Research Network East of England, the NIHR Applied Research Collaboration East of England, and MND Scotland. EM provided consultancy for LifeArc. EM is a member of the MND Association Healthcare Research Panel and NIHR DLAF committee. SH reports no disclosures. Funding and Acknowledgements: This project was funded by the Motor Neurone Disease Association UK, with additional support from the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE), and the Clinical Research Network East of England. EM is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Authors' contributions: TKC led on the study design and data collection. TKC and EM worked together in the data analysis, with regular contributions from SH. EM prepared the first draft with significant contributions from SH and TKC. EM prepared figure 1. All authors reviewed, edited, and approved the manuscript. References Lerum SV, Solbraekke KN, Frich JC. Family caregivers' accounts of caring for a family member with motor neurone disease in Norway: a qualitative study. BMC Palliat Care . Feb 24 2016;15:22. doi:10.1186/s12904-016-0097-4 Hardiman O, Al-Chalabi A, Chio A, et al. Amyotrophic lateral sclerosis. Nat Rev Dis Primers . Oct 20 2017;3:17085. doi:10.1038/nrdp.2017.85 Mioshi E, Lillo P, Kiernan M, Hodges J. Activities of daily living in motor neuron disease: role of behavioural and motor changes. J Clin Neurosci . Apr 2012;19(4):552-6. doi:10.1016/j.jocn.2011.07.042 Conroy E, Kennedy P, Heverin M, et al. Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties. Brain Sci . Aug 20 2021;11(8)doi:10.3390/brainsci11081094 Harris M, Thomas G, Thomas M, et al. Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis. Palliat Support Care . Apr 2018;16(2):228-237. doi:10.1017/S1478951517000700 Zago S, Lorusso L, Aiello EN, et al. Cognitive and behavioral involvement in ALS has been known for more than a century. Neurol Sci . Dec 2022;43(12):6741-6760. doi:10.1007/s10072-022-06340-0 Renton AE, Majounie E, Waite A, et al. A hexanucleotide repeat expansion in C9ORF72 is the cause of chromosome 9p21-linked ALS-FTD. Neuron . Oct 20 2011;72(2):257-68. doi:10.1016/j.neuron.2011.09.010 DeJesus-Hernandez M, Mackenzie IR, Boeve BF, et al. Expanded GGGGCC hexanucleotide repeat in noncoding region of C9ORF72 causes chromosome 9p-linked FTD and ALS. Neuron . Oct 20 2011;72(2):245-56. doi:10.1016/j.neuron.2011.09.011 Strong MJ, Abrahams S, Goldstein LH, et al. Amyotrophic lateral sclerosis - frontotemporal spectrum disorder (ALS-FTSD): Revised diagnostic criteria. Amyotroph Lateral Scler Frontotemporal Degener . May 2017;18(3-4):153-174. doi:10.1080/21678421.2016.1267768 Stavrou M, Newton J, Stott G, et al. National audit of cognitive assessment in people with pwMND A national audit of cognitive assessment in people with motor neurone disease (pwMND) in Scotland. Amyotroph Lateral Scler Frontotemporal Degener . Aug 2020;21(5-6):459-462. doi:10.1080/21678421.2020.1752249 Trucco AP, Backhouse T, Mioshi E, Kishita N. Factors associated with grief in informal carers of people living with Motor Neuron Disease: A mixed methods systematic review. Death Stud . Feb 2024;48(2):103-117. doi:10.1080/07481187.2023.2191351 Cui B, Cui LY, Liu MS, et al. Behavioral Symptoms in Motor Neuron Disease and Their Negative Impact on Caregiver Burden. Chin Med J (Engl) . Sep 5 2015;128(17):2295-300. doi:10.4103/0366-6999.163393 Lillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: a comparative study. BMC Neurol . Dec 7 2012;12:156. doi:10.1186/1471-2377-12-156 Chio A, Vignola A, Mastro E, et al. Neurobehavioral symptoms in ALS are negatively related to caregivers' burden and quality of life. Eur J Neurol . Oct 2010;17(10):1298-303. doi:10.1111/j.1468-1331.2010.03016.x Silverman HE, Ake JM, Manoochehri M, et al. The contribution of behavioral features to caregiver burden in FTLD spectrum disorders. Alzheimers Dement . Sep 2022;18(9):1635-1649. doi:10.1002/alz.12494 Olesen LK, la Cour K, With H, Mahoney AF, Handberg C. A cross-sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments. BMC Health Serv Res . May 24 2022;22(1):697. doi:10.1186/s12913-022-07986-4 Mioshi E, Grant K, Flanagan E, et al. An online intervention for carers to manage behavioural symptoms in Motor Neuron Disease (MiNDToolkit): a randomised parallel multi-centre feasibility trial. (under review) . 2024; Katangwe-Chigamba T, Flanagan E, Mioshi E. The implementation of MiNDToolkit intervention for the management of behavioural symptoms in MND by healthcare professionals: a mixed methods process evaluation. Under review . 2024; Moore GF, Audrey S, Barker M, et al. Process evaluation of complex interventions: Medical Research Council guidance. BMJ . Mar 19 2015;350:h1258. doi:10.1136/bmj.h1258 Byrne D. A worked example of Braun and Clarke’s approach to reflexive thematic analysis. Quality & Quantity 2022;56:1391-1412. Pinto C, Geraghty AWA, Yardley L, Dennison L. Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study. BMJ Open . Aug 17 2021;11(8):e044724. doi:10.1136/bmjopen-2020-044724 Waldron EJ, Barrash J, Swenson A, Tranel D. Personality disturbances in amyotrophic lateral sclerosis: a case study demonstrating changes in personality without cognitive deficits. J Int Neuropsychol Soc . Aug 2014;20(7):764-71. doi:10.1017/S1355617714000459 Trucco AP, Khondoker M, Kishita N, Backhouse T, Copsey H, Mioshi E. Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone Disease: The impact of disease symptomatology. (under review) . 2024; van Groenestijn AC, Schroder CD, Visser-Meily JM, Reenen ET, Veldink JH, van den Berg LH. Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial. Amyotroph Lateral Scler Frontotemporal Degener . 2015;16(5-6):309-15. doi:10.3109/21678421.2015.1038276 Genuis SK, Luth W, Bubela T, Johnston WS. What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project. Muscle Nerve . Sep 2023;68(3):286-295. doi:10.1002/mus.27935 Contreras M, Van Hout E, Farquhar M, et al. Internet-delivered guided self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS): a qualitative study of carer views and acceptability. Int J Qual Stud Health Well-being . Dec 2022;17(1):2066255. doi:10.1080/17482631.2022.2066255 Olesen LK, la Cour K, Thorne S, With H, Handberg C. Perceived benefits from peer-support among family caregivers of people with amyotrophic lateral sclerosis and cognitive impairments in a palliative rehabilitation blended online learning programme. J Eval Clin Pract . Jun 2023;29(4):602-613. doi:10.1111/jep.13808 Additional Declarations Competing interest reported. Disclosures EM and TKC were funded by the MND Association. EM was funded by the NIHR Clinical Research Network East of England, the NIHR Applied Research Collaboration East of England, and MND Scotland. EM provided consultancy for LifeArc. EM is a member of the MND Association Healthcare Research Panel and NIHR DLAF committee. SH reports no disclosures. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4281327","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":295510397,"identity":"f6fe2bf5-c69f-4db4-9d5b-269c23a6f569","order_by":0,"name":"Eneida Mioshi","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAyUlEQVRIiWNgGAWjYJCCA0DEww/n8hCrRbKBFC1gXQYHiNXCz8CdeODDnzsyxjeSD35gqLFjMDhzAL8WyQbeDQdntj3jMbuRlizBcCyZweBsA34tBgd4NxzmbTgM1JJjIMHABnTheQIOswdp4flzmMd4Rv7nHwz/iNBiwADSwnaYx0Aih02Cse0AYYdJHAb75TCPxJlnZhaJfck8koS8z9/eu/nDhz+H7fnbkx/f+PDNTo7vTAIBlzEjcxKIjshRMApGwSgYBXgBAEZcRY0KI7nUAAAAAElFTkSuQmCC","orcid":"","institution":"University of East Anglia","correspondingAuthor":true,"prefix":"","firstName":"Eneida","middleName":"","lastName":"Mioshi","suffix":""},{"id":295510400,"identity":"23a22b67-e1ea-4381-b7eb-5d043e5b33d3","order_by":1,"name":"Sue Heal","email":"","orcid":"","institution":"MND Association Norfolk, Norwich \u0026 Waveney Branch","correspondingAuthor":false,"prefix":"","firstName":"Sue","middleName":"","lastName":"Heal","suffix":""},{"id":295510403,"identity":"929940fd-c63d-40ab-8229-532758c8c0e5","order_by":2,"name":"Thando Katangwe-Chigamba","email":"","orcid":"","institution":"University of East Anglia","correspondingAuthor":false,"prefix":"","firstName":"Thando","middleName":"","lastName":"Katangwe-Chigamba","suffix":""}],"badges":[],"createdAt":"2024-04-17 10:42:12","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4281327/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4281327/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12883-024-03746-5","type":"published","date":"2024-07-09T00:00:00+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":55368369,"identity":"69acfcd6-b3a8-45ca-9c52-a08cb789b01e","added_by":"auto","created_at":"2024-04-26 10:32:45","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":273467,"visible":true,"origin":"","legend":"\u003cp\u003eThemes and sub-themes identified in carers’ interviews exploring experiences of behavioural symptoms before and after MiNDToolkit.\u003c/p\u003e","description":"","filename":"Figure1.png","url":"https://assets-eu.researchsquare.com/files/rs-4281327/v1/a2de65502207756cf5c81de8.png"},{"id":61436492,"identity":"34820bac-a70a-48c6-b329-ae53f2e7f542","added_by":"auto","created_at":"2024-07-30 17:55:28","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1080472,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4281327/v1/0be0b2db-0aec-466d-8a82-f478a4138e5f.pdf"},{"id":55368367,"identity":"6500709e-6cfe-4d25-8dbf-dd9819671c09","added_by":"auto","created_at":"2024-04-26 10:32:44","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":18110,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix1.docx","url":"https://assets-eu.researchsquare.com/files/rs-4281327/v1/4d6ce6cfb8b029b1e57bbe5f.docx"}],"financialInterests":"Competing interest reported. Disclosures\nEM and TKC were funded by the MND Association. EM was funded by the NIHR Clinical Research Network East of England, the NIHR Applied Research Collaboration East of England, and MND Scotland. EM provided consultancy for LifeArc. EM is a member of the MND Association Healthcare Research Panel and NIHR DLAF committee. SH reports no disclosures.","formattedTitle":"‘A lightbulb moment’: carers’ experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit","fulltext":[{"header":"Introduction","content":"\u003cp\u003eCaring for someone with Motor Neuron Disease (MND) is multifaceted and emotionally demanding; care provided is varied and progressively more intense, including need to understand the progression of the disease, managing competing tasks and external resources and trying to maintain normality\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e. This is because MND is a progressive neurodegenerative disease characterised by degeneration of upper and lower motor neurons, leading to muscle atrophy, loss of function\u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e and death. As such, people with MND (pwMND) become progressively dependent on others due to the deficits associated with the changes in various body systems\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e. Most of the care is provided by family members, usually a spouse or child\u003csup\u003e\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u003c/sup\u003e, with or without the help of paid carers or others. Despite the major role that family members have in providing care in MND, there is very limited evidence on how to best support carers of PwMND\u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u003c/sup\u003e, in particular when complex symptoms associated with frontotemporal dementia (FTD) are present.\u003c/p\u003e \u003cp\u003eThe existence of behavioural symptoms (BehSymp) in MND, such as disinhibition, apathy, obsessive behaviours, and hallucinations, have been described for many decades\u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e. However, MND\u0026rsquo;s link with FTD has been reignited more recently with the identification of the role of the C9orf72 gene\u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e,\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e, which brought MND and FTD alongside a clinical, pathological, and genetic continuum. Since then, the development of assessments to support identification of cognitive and BehSymp has strengthened, and the international ALSFTD diagnosis criteria has been revised\u003csup\u003e\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e. Efforts have been made to ensure regular assessments are included in MND clinical care, but these are still not consistently conducted in many specialist MND services, though healthcare professionals (HCP) show increased awareness\u003csup\u003e\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e. Assessments of non-motor symptoms are of great relevance for not only for disease management, but especially for carers. BehSymp have been shown to be associated with carers\u0026rsquo; perceptions of loss\u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e, and BehSymp are recognised to underpin higher rates of carer burden in many countries\u003csup\u003e\u003cspan additionalcitationids=\"CR13 CR14\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eEvidence on clinical management of BehSymp is nascent. A Danish study investigated an online peer-support group for carers, showing good engagement with the intervention but low completion rates\u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e. A recent national randomised feasibility trial of the MiNDToolkit showed promising results\u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e, and strong relevance for HCPs\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e. As such, the present study aimed to investigate MiNDToolkit\u0026rsquo;s acceptability by carers. This study was conducted alongside the MiNDToolkit feasibility trial. Here, we undertook a qualitative process evaluation to explore and understand carers\u0026rsquo; acceptability and application of the MiNDToolkit intervention, and their experiences of behavioural symptoms prior to using MiNDToolkit, and after.\u003c/p\u003e"},{"header":"Materials and Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDesign\u003c/h2\u003e \u003cp\u003eA qualitative process evaluation of carers\u0026rsquo; engagement with and acceptability of the MiNDToolkit conducted using semi-structured interviews\u003csup\u003e\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e. Ethical approval: London Queen Square Research Ethics Committee (19/LO/0692, IRAS260290).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eStudy setting\u003c/h2\u003e \u003cp\u003eThe MiNDToolkit study (ISRCTN 15746123), a randomised controlled feasibility trial, was conducted across 11 sites in England and Wales between July/2021-March/2023. All participating sites including Hospitals, MND Care and Research Centres, Community teams and Hospices, had advanced MND care set up.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eThe MiNDToolkit\u003c/h2\u003e \u003cp\u003eMiNDToolkit is a complex intervention for the management of behavioural symptoms by carers\u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e. The intervention consists of tailored online psychoeducational modules and strategies to manage reported symptoms. Learning and strategies are reinforced by trained HCPs during appointments.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eParticipants and recruitment\u003c/h2\u003e \u003cp\u003eEligible carers (family carers, relatives or live-in professional carers) had regular contact with a person diagnosed with MND-FTD or MND with cognitive or behaviour impairment. All carers, allocated to the intervention arm during or after the intervention period (former controls), were invited to take part in the mixed-methods evaluation. The process evaluation results for HCPs have been reported elsewhere\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eData collection\u003c/h2\u003e \u003cp\u003eEleven individual semi-structured interviews were conducted. Carers were asked about their understanding and experiences with symptoms of MND, and how they managed them before MiNDToolkit. To further explore engagement and acceptability, carers were then asked about their experience of the MiNDToolkit Online Platform and HCP support. Carers were also asked about their perceived impact of the intervention on the management of symptoms. Interviews were guided by a topic guide and conducted virtually (TKC) on MS Teams, audio recorded, and professionally transcribed verbatim (Topic guide, Appendix-1).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eAnalysis\u003c/h2\u003e \u003cp\u003eInterview data were inductively analysed using Reflective Thematic Analysis\u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u003c/sup\u003e to understand carers experiences. The analytical process involved an initial familiarisation with the data followed by inductive coding by two researchers (EM, TKC). This was followed by discussion and analysis meetings where a former carer of a spouse with MNDFTD (SH) joined the two researchers (EM, TKC) to develop an understanding of primary concepts from the data and explore interpretations to identify key subthemes and themes.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eEleven carers were interviewed between May 2022 and June 2023. Demographic and engagement in the intervention are described in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCarers\u0026rsquo; characteristics and details of their engagement with MiNDToolkit (n\u0026thinsp;=\u0026thinsp;11).\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCarer age (Mean and SD)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e63.18 (6.42)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCarer gender\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9/11 female\u003c/p\u003e \u003cp\u003e2/11 male\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eRelationship with the PwMND\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10/11 spouse or partner\u003c/p\u003e \u003cp\u003e1/11 parent\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eHours of care provided per week\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1\u0026ndash;4 hours/week\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e15\u0026ndash;22 hours/week\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e31\u0026ndash;49 hours/week\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e50\u0026ndash;99 hours/week\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e100 hours or more/week\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eWhat was the official diagnosis given to the person with MND\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eALS\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBulbar onset or Progressive Bulbar Palsy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProgressive Muscular Atrophy\u003c/p\u003e \u003cp\u003ePrimary Lateral Sclerosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1/11\u003c/p\u003e \u003cp\u003e0/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMNDFTD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNot sure\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEngagement with MiNDToolkit\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEngagement with the MiNDToolkit platform (3 month-period)\u003c/p\u003e \u003cp\u003e\u003cem\u003eNumber of times logged in during intervention phase (Mean and SD)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e20.18\u003c/p\u003e \u003cp\u003e(9.65)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInitial allocation of study arm\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10/11 Intervention\u003c/p\u003e \u003cp\u003e1/11 Control\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCarers asking to use the MiNDToolkit beyond intervention or Control period\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHCP reinforcement\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes, 7/11\u003c/p\u003e \u003cp\u003eOnline only, 4/11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eFive themes were identified (Fig.\u0026nbsp;1).\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eTheme 1. In the dark: carers\u0026rsquo; experiences of and reactions to behavioural symptoms (Fig.\u0026nbsp;1)\u003c/h2\u003e \u003cdiv id=\"Sec11\" class=\"Section3\"\u003e \u003ch2\u003e1.1. Seeing but not understanding\u003c/h2\u003e \u003cp\u003eCarers\u0026rsquo; recollections and experiences of when BehSymp were first noticed in relation to the time of diagnosis varied, with some first noticing the symptoms prior to diagnosis, while others after diagnosis was made. Carers gave examples of a range of behavioural symptoms: inability to understand another person\u0026rsquo;s perspective, lack of insight, rigidity, eating changes, and hallucinations.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Well I didn\u0026rsquo;t actually associate it with MND. This was quite a while before he was diagnosed. He started having an obsession that we had bedbugs in the house and that he had been bitten. Anyway, I spoke to his GP about it [\u0026hellip;] and the GP arranged to come up and see him. They had given him some [inaudible] cream which takes away the itching and the sensation that he\u0026rsquo;s got, bugs crawling on him, and that seems to have done the trick. But every now and again he will still bring it up. He might have a nail scratch that, you know, he\u0026rsquo;s scratched himself during the night and then he\u0026rsquo;ll say, \u0026lsquo;Look, I\u0026rsquo;ve been bitten.\u0026rsquo; And he\u0026rsquo;s actually produced things in his hand and said, \u0026lsquo;Look, I\u0026rsquo;ve caught one,\u0026rsquo; and it\u0026rsquo;s been a piece of fluff\u003c/em\u003e.\u0026rdquo; \u003cb\u003eCarer 02 describing an example of hallucination\u003c/b\u003e\u003c/p\u003e\u003cp\u003e \u003cb\u003e\u0026ldquo;\u003c/b\u003e \u003cem\u003eAn example is like if we\u0026rsquo;re both getting dressed and he\u0026rsquo;s dressed, he\u0026rsquo;ll want to put his coat on long before we\u0026rsquo;re ready to go out and he expects me to stop what I\u0026rsquo;m doing to come and put his coat on, even though he\u0026rsquo;s not ready. Or if he\u0026rsquo;s looking for something, or if he wants his nails done and I\u0026rsquo;m doing something and I stop whatever I\u0026rsquo;m doing to attend to it, that\u0026rsquo;s what I mean by that selfishness. Well, he would have never done that before, he has no consideration for whatever I could be doing\u0026rdquo;.\u003c/em\u003e \u003cb\u003eCarer 01 describing an example of rigidity\u003c/b\u003e\u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I mean I would make, I make home made soup but when he was having soup every day, he wouldn\u0026rsquo;t eat it, he would insist on having a shop bought soup, not least of all because he wanted to know how many calories were in everything he ate.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 09 describing an example of eating changes\u003c/b\u003e\u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;He gets obsessed about silly things like he thinks the next door neighbour put a new fence up and he\u0026rsquo;s convinced, even though he\u0026rsquo;s housebound, he\u0026rsquo;s convinced that that neighbour has stolen land and moved the fence closer onto our property.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 02 describing an example of delusion\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eA shared experience reported by most carers was the inability to link the BehSymp to MND. Carers reported observing behaviours that did not make sense or were out of character. Although the changes were noticeable, carers could not understand the reasons behind unusual reactions and behaviours from the PwMND. This lack of understanding led to carers\u0026rsquo; confusion, and constant attempts to try to make sense of what was happening.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;The changes in the personality was there, in behaviour, but then I thought it was, I put it down to other things, i.e., maybe depressed or there were times when we were socialising with friends and he would drink. And he normally, he would drink and it\u0026rsquo;s just the way it would affect him, and so I thought, \u0026ldquo;Oh my God, there is a problem with the drinking.\u0026rdquo; But there wasn\u0026rsquo;t because I think it\u0026rsquo;s just whatever was going on.\u0026rdquo; So before the diagnosis, I knew that something was wrong but I couldn\u0026rsquo;t put my finger on it.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 01\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eReflecting back, some carers noticed that physical deficits associated with MND affected the expression of behavioural symptoms, e.g., when bulbar symptoms were present and inability to verbally communicate disguised symptoms.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;He\u0026rsquo;s always been very philosophical. I think at the moment communication is very difficult because there\u0026rsquo;s no speech but he uses a phone with an app on it, predictable app, and various other things to help him communicate. But at the moment because the cognition isn\u0026rsquo;t so good and because the fine motor skills are not so good, typing and reading have become very difficult. In fact he can\u0026rsquo;t read at all and he can\u0026rsquo;t write, he\u0026rsquo;s lost his fine motor skills, so in his hands.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 03\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003e1.2. Carers\u0026rsquo; emotional reactions to the changes and symptoms: sadness, anger, disappointment\u003c/h2\u003e \u003cp\u003eThe lack of recognition of behavioural symptoms made carers feel alone, as they did not want to share their fears and worries with the PwMND or felt they had to shoulder the impact of the changes as the PwMND was unable to share this load. Even after learning about symptoms, some carers felt guilty and disloyal to the pwMND by having to talk about these difficult behaviours, even if the PwMND was not present in the room.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Well I suppose I was feeling guilty about sort of sharing with other people, you know, people like yourself or whoever is involved in it, sharing negative things about him.\u0026rdquo;\u003c/em\u003e\u003cb\u003eCarer 09\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eCarers reported sadness and loss of the person that they used to be, not only in relation to physical abilities, but to their cognitive abilities, which they found the most difficult.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;And I think it\u0026rsquo;s the psychological side of the condition that I find hardest to cope with. The physical side, I mean to a great extent you can get your way around a lot of the physical, although obviously it will get harder. But a lot of the mental stuff is quite difficult, it is quite challenging [\u0026hellip;] And it\u0026rsquo;s just that you realise it\u0026rsquo;s not \u0026ndash; although it\u0026rsquo;s the same person, some of the sharp comments or different things aren\u0026rsquo;t the comments that you would have had previously.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 10\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eBehSymp negatively impacted on carers, who reported that this was not what they had expected of a terminal illness. The unnamed experiences of BehSymp also led to other negative feelings such as pain and anger.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Well it was kind of like unknown territory really. You know, you\u0026rsquo;re dealing with someone that you know very well but behaves in a way that you know is not their usual behaviour. And also as well, you know, [name 2] is someone who I care for and I love who has got a terminal illness, so there is guilt, there is anger, there is all of those emotions all rolled up. And then you\u0026rsquo;re dealing with someone who at times seems unreasonable and you can\u0026rsquo;t respond in the normal way you would do, so confusion [\u0026hellip;] Confusion and anger and upset and all those emotions, they\u0026rsquo;re all \u0026ndash; it\u0026rsquo;s a very jumbled, you go from one to the other. It\u0026rsquo;s like there are three emotions, you jump from one to the other and then you think in between and then you have to approach the whole thing a different way, each time, yeah.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 01\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eRelationships became strained as some carers interpreted the PwMND\u0026rsquo;s behaviour as intended actions towards them, not symptoms. For example, carers reported that the PwMND had become unreasonable and selfish, when they may have lost their ability to empathise and read other people\u0026rsquo;s emotions. Disappointment was also reported, especially when lack of empathy was present.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;You know, being unreasonable, being selfish to the point of not understanding. Because we\u0026rsquo;re all selfish but we understand when we\u0026rsquo;re being selfish. But when someone is being totally selfish and don\u0026rsquo;t understand it, that\u0026rsquo;s really hard, that\u0026rsquo;s a hard one to deal with when you want things your own way all the time or you want things done now because that\u0026rsquo;s what you need, your need must be met straightaway, regardless of whatever else I\u0026rsquo;m doing or involved with, you know?\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 01\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e \u003cb\u003eTheme 2. Others can see and support: the role of HCPs in identifying behavioural symptoms - and perceived opportunities for carers to receive support\u003c/b\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003e2.1. Professional-led identification of behavioural symptoms and support\u003c/h2\u003e \u003cp\u003eCarers related several instances where the identification of behavioural symptoms were led by a member of the MDT. These were either directly via a conversation, after the result of a cognitive assessment, or triggered by genetic testing which would have indicated that the MND phenotype was related to a genetic form associated with frontotemporal dementia.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Because the motor neurone disease nurses had made me aware of what the frontotemporal dementia would bring, how it would manifest itself. So you know, when you hear that and then you start putting things together, you think \u0026lsquo;OK, yes\u0026rsquo;.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 06\u003c/b\u003e\u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Yes. Well as the neurologist explained to me, she said, it\u0026rsquo;s like, she said there are lots of things which are still there. She said, \u0026lsquo;Look, with [PwMND]\u0026rsquo;, she said, \u0026lsquo;It\u0026rsquo;s a frontal\u0026rsquo;, and she said to me, \u0026lsquo;It\u0026rsquo;s like the captain of the ship has left so everything is a bit of a muddle\u0026rsquo;.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 01\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eAgainst the difficult context of a rapidly progressive condition such as MND, carers reported that without intervention from the professionals, they may not have realised that they needed help with non-motor symptoms or expressed uncertainty as to which type of support they required. Carers were therefore particularly positive about instances where professionals helped them understand behavioural symptoms and stepped in to provide support for carers. Some professionals highlighted that the carer needed support and referred to counselling or took the time to explain the behavioural symptoms in MNDFTD.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;When the dietician, as I said, she rings every five weeks I think it is, and I always answer the phone and she always says, \u0026ldquo;How is it going [carer\u0026rsquo;s name]? How is [PwMND}, has he been good?\u0026rdquo; And you know, \u0026ldquo;Have you tried that?\u0026rdquo; I said, \u0026ldquo;He\u0026rsquo;s still losing weight.\u0026rdquo; \u0026ldquo;Have you tried this? Have you tried that?\u0026rdquo; That\u0026rsquo;s really helpful to me.\u0026rdquo;\u003c/em\u003e\u003cb\u003eCarer 05\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003e2.2. Services are not designed to support carers\u003c/h2\u003e \u003cp\u003eDespite some positive experiences with HCPs described above, many carers struggled with lack of support. Carers reported not having the experience of being told by HCPs that non-motor symptoms were part of MND, prior to the MiNDToolkit. Carers alluded to the limited opportunity for open discussion with professionals in the current service design; with some carers feeling excluded from the appointment. At times, communication played a big role in misunderstandings, with carers feeling that they were \u0026lsquo;abandoned\u0026rsquo; by the team. Telephone contact was also not viewed as proper support, being deemed as too impersonal.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;And I think the other thing is, is that whatever is told to you in clinic, you only \u0026ndash; you don\u0026rsquo;t, a) it\u0026rsquo;s all about the patient, not the carer, and also [\u0026hellip;] it\u0026rsquo;s very much, it\u0026rsquo;s from a clinical perspective, so it\u0026rsquo;s the medical side of the condition, not, just not so much the psychological side of the condition. And I think it\u0026rsquo;s the psychological side of the condition that I find hardest to cope with. The physical side, I mean to a great extent you can get your way around a lot of the physical, although obviously it will get harder. But a lot of the mental stuff is quite difficult, it is quite challenging.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 10\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eCarers felt that current services were focused only on time with the PwMND, with some carers even reporting that they did not feel they had a right to receive support from the NHS and felt that they should be coping on their own. Even when professionals appropriately recognised the carer\u0026rsquo;s need for counselling, and this was set up, it still left the carer feeling \u0026lsquo;like a fraud\u0026rsquo; for having received help.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;\u0026rsquo;Just phone me any time\u0026rsquo;. but I just know how busy these people are [HCPs] and I just feel I should be able to cope with this on my own, so I don\u0026rsquo;t contact them. I know that for the NHS to provide help for carers, they haven\u0026rsquo;t got the funds to do that, so it\u0026rsquo;s a very difficult call but I really think there\u0026rsquo;s a need and perhaps the coffee morning will be our answer if we try it again because that\u0026rsquo;s not financially dependent on the NHS, that\u0026rsquo;s MND Association that does that.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 05\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eOutside of NHS services, some carers reported receiving informal support from volunteers from the MND Association, family and friends, which occurred alongside formal support. But for others, these informal channels felt like their only source of support. Thinking ahead, some carers decided to take part in research because it would offer them an opportunity to receive greater support from their MND team.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e \u0026ldquo;But just even if it was for me to pick up the phone to one of the other carers and say, \u0026ldquo;This is happening, you know, is this normal?\u0026rdquo; I feel that I could probably do that rather than pick up the phone and speak to somebody like [HCP], who I know are really, really busy people. If it\u0026rsquo;s another carer I think you can be a bit more informal and, I don\u0026rsquo;t know.\u0026rdquo;\u003c/em\u003e\u003cb\u003eCarer 05\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;From a very selfish perspective, felt that if we were actually involved [in research] we\u0026rsquo;d probably get more help because we would know the people more and feel \u0026ndash; if you\u0026rsquo;re involved, we felt we\u0026rsquo;d be able to ask for help more than if you\u0026rsquo;re \u0026ndash; if all you\u0026rsquo;re doing is going along to an appointment every four months, you have no relationship.\u0026rdquo;\u003c/em\u003e\u003cb\u003eCarer 10\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: Carer implementation and perceived impact of the MiNDToolkit content\u003c/h2\u003e \u003cdiv id=\"Sec16\" class=\"Section3\"\u003e \u003ch2\u003e3.1. The full picture of MND resonating with carers\u003c/h2\u003e \u003cp\u003eCarers reported that, prior to MiNDToolkit, they thought MND to be a \u0026lsquo;physical disease\u0026rsquo;. As such, behaviour symptoms were perceived to be out of context. This gap in understanding often led to carers attempting to rationalise with the PwMND, which lead to arguments.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I found it really, really hard to be honest because the natural reaction is to try and explain to the person, \u0026lsquo;No, you\u0026rsquo;re wrong, you know, we haven\u0026rsquo;t got bedbugs and they haven\u0026rsquo;t \u0026ndash; the neighbours haven\u0026rsquo;t stolen our land.\u0026rsquo; And it ends up in an argument because you can\u0026rsquo;t kind of explain to them that what they\u0026rsquo;re thinking isn\u0026rsquo;t right. And it\u0026rsquo;s only since doing the MiNDToolkit that I\u0026rsquo;ve kind of realised it\u0026rsquo;s not worth trying to correct them. Just, you know, just accept what they\u0026rsquo;re saying and just maybe distract, we change the subject.\u0026rdquo;\u003c/em\u003e\u003cb\u003eCarer 02\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eWith MiNDToolkit, carers acquired understanding that those BehSymp were due to MND, which in turn alleviated the uncertainty of the root cause of the distressing behaviours. Carers were able to put together what they had observed, with the information provided by their nurse, and felt it \u0026lsquo;all makes sense\u0026rsquo;. Additionally, they felt that MiNDToolkit gave legitimacy to what was happening, because there was scientific evidence in explaining the difference between apathy and depression.\u003c/p\u003e \u003cp\u003eOne of the carers found MiNDToolkit resonated particularly well with them, given that the PwMND they cared for had had BehSymp due to a pre-existing condition.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Oh crikey, where do I start? It was like a light bulb had gone off, literally and there was so many things as I was going through the modules and I was thinking, \u0026ldquo;Wow, yes, that\u0026rsquo;s happened to me, that\u0026rsquo;s happened to us.\u0026rdquo; And, like I say, it was a real revelation to know that all these things that we\u0026rsquo;d been going through were actually part of the disease and it wasn\u0026rsquo;t my partner becoming more obstructive, more awkward, more combative, as something in addition to MND, it was actually part of MND. And, yeah, and the hallucinations as well, you know, it kind of all made sense and it all fitted into place, yeah.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 02\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eCarers felt empowered to be able to talk about symptoms, using new terms learned via the platform. A sense of control could also be noticed when carers felt prepared for potential symptoms in future.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;They were helpful because I hadn\u0026rsquo;t \u0026ndash; at that stage, the very fact I could talk to you about it, I wouldn\u0026rsquo;t have been able to talk to you about it if I hadn\u0026rsquo;t watched the video because I wouldn\u0026rsquo;t have known.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 10\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003e3.2. Full picture leading to validation and acceptance\u003c/h2\u003e \u003cp\u003e The MiNDToolkit also validated carers\u0026rsquo; experiences. Videos from the modules provided reassurance that other families have had similar struggles, and that options for help were available. Validation of their emotions supported normalisation of their reactions, while reassuring carers that they were doing the best that they could.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I think to know that other people have struggled the same as I\u0026rsquo;m struggling, that it\u0026rsquo;s not a weakness that I\u0026rsquo;ve got, other people are struggling with the MND, with the illness itself, and the people that they love that have got the illness. That there is, when they get, when the person with MND gets really bad, there is help there if needed\u0026rdquo;.\u003c/em\u003e\u003cb\u003eCarer 05\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIncreased knowledge and understanding about BehSymp appeared to facilitate acceptance of them as part of MND, which leads to changes in carer\u0026rsquo;s own behaviours and reactions, as well as using strategies, when BehSymp occur. Acceptance of BehSymp was also demonstrated by carers reflecting that the PwMND cannot help behaving in a new certain way, that behaviours may not be rational choices, and that their new approach is to use the learned strategies rather than arguing back.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Well now I just accept that he does have these thoughts and I don\u0026rsquo;t get upset with him myself, which I would have done previously. And I don\u0026rsquo;t contradict him, I don\u0026rsquo;t argue back, I just accept what he\u0026rsquo;s saying and kind fall short of doing any \u0026ndash; offering to do anything about it because obviously I can\u0026rsquo;t do anything about all these things that he\u0026rsquo;s thinking. But I will try and - I\u0026rsquo;ll try and change the subject onto something else.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 02\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003e3.3. A new approach: carer able to reduce conflict, feeling upskilled and sharing new learning\u003c/h2\u003e \u003cp\u003eStrategies suggested by the MiNDToolkit added new skills to carers\u0026rsquo; portfolios, making them feel supported and equipped. This learning enabled different actions and reactions, making things easier for the carer by reducing conflict. Carers also learned to phrase things differently, to reduce resistance from the PwMND in decision making processes.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I think the main thing is that you suggest in the Toolkit, this is just strategies that you can employ. And I think having those strategies as a kind of crutch, something to lean on, something to look up, it kind of makes you feel that you are supported in a way because you\u0026rsquo;ve got a way of dealing with it. Rather than, you know, if you\u0026rsquo;re just on your own, you just kind of look at that person and you\u0026rsquo;re dealing with them as though it\u0026rsquo;s somebody who hasn\u0026rsquo;t got any behavioural issues and there\u0026rsquo;s a tendency to kind of react in the moment whereas, you know, if you\u0026rsquo;ve got that Toolkit, you can look at various different ways that you could react.\u0026rdquo;\u003c/em\u003e\u003cb\u003eCarer 02\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eBut some strategies were not always applied as intended by MiNDToolkit. A couple of examples demonstrated that carers may have understood that a certain behaviour reflected a symptom, e.g., \u0026lsquo;rigidity/lack of flexibility\u0026rsquo; (part of MiNDToolkit) - but then applied a strategy of \u0026lsquo;shouting\u0026rsquo; to try to overcome the symptom of rigidity (not part of MiNDToolkit). Most of the time, though, carers demonstrated application of the learned strategies during interviews, for example \u0026lsquo;Prepare and Increase Awareness\u0026rsquo;, through sharing the learning with others.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;And the other thing which I\u0026rsquo;ve started to do is, yeah, is to tell friends and family about the changes beforehand [\u0026hellip;] To tell, let everyone know beforehand that there is a slight change in personality. So I wasn\u0026rsquo;t feeling the pressure it brought, so in social occasion.\u0026rdquo;\u003c/em\u003e\u003cb\u003eCarer 01\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eTheme 4: Acceptability and carers\u0026rsquo; engagement with MiNDToolkit\u003c/h2\u003e \u003cp\u003eWe identified some key factors in carers\u0026rsquo; engagement with the intervention.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003e4.1. Timing for using MiNDToolkit\u003c/h2\u003e \u003cp\u003eFor some, the key motivation to engage with the MiNDToolkit was a desire to prepare for future symptoms and/or a need to understand the causes of behavioural changes. For these carers, early access to the MiNDToolkit was important to equip them to deal more confidently, and better, with the behavioural changes associated with MND.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I know some people think ignorance is bliss, but I like to know more information so that I\u0026rsquo;m prepared. So for me, personally, I would rather know well this might happen or this could happen. And just knowing that it may happen then I can prepare myself.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 05\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eSome carers felt MiNDToolkit arrived too late, when they had already learned to adapt to the situation. As such, most carers reported that accessing MiNDToolkit early in the post-diagnostic phase would have been more useful. However, others felt an early introduction might be overwhelming whilst they were still coming to terms with the diagnosis. A lack of readiness was generally associated with anxiety and fears. Some carers reported anxiety in knowing about things that might happen, which at times led to avoidance in engaging with the platform. Others reported that they knew they needed to engage with MiNDToolkit, but felt they needed to be in an emotionally stable place to take things in.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I think that maybe about a month after diagnosis because I know at the time [PwMND] was diagnosed, I was on the internet, I was looking through the book and reading up as much as I possibly could about it to know what we could expect in the future and how it might progress. But then as time wears on you kind of put all that to the back of your mind and just focus on coping. So I think at some point initially, maybe within the first couple of months, the Toolkit might \u0026ndash; it might be good then to introduce it whilst somebody is still in the frame of mind that they want to know as much as they possibly can and at least then they\u0026rsquo;re prepared for the behavioural and mental changes ahead of time. You know, they know about it from more or less the get-go.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 02\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eOverall, it appeared that a gentle introduction by HCPs, responding to the carers\u0026rsquo; cues would be the most appropriate guidance for the timing. For some carers with initial perceptions that they did not need support from the MiNDToolkit, timely intervention and encouragement from trained HCPs was highlighted as vital for engagement.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Initially when I just got the information through the post saying, \u0026ldquo;Do you want to do this?\u0026rdquo; My initial reaction was no, partly because I thought can I be bothered? Do I need to do it? I wouldn\u0026rsquo;t have done it had the OT \u0026ndash; had we not had that discussion about him being fixated on this bit of equipment and her saying to me, you know, it was just, I suppose fortuitous that it happened at the same time as I\u0026rsquo;d received the information about it, you know. And she said to me, \u0026ldquo;Have you received the information about this thing? Do you want to do it?\u0026rdquo; And I said, \u0026ldquo;Yes, I have but no, I probably won\u0026rsquo;t do it.\u0026rdquo; And she said, \u0026ldquo;I absolutely think you should because it will help you understand why he\u0026rsquo;s behaving like this. So you know, until that point, if we hadn\u0026rsquo;t had that conversation, I possibly wouldn\u0026rsquo;t have done it.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 09\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe stage of the disease itself was also factor in the timing for carers\u0026rsquo; engagement. Progression of the disease whilst having access to the MiNDToolkit was seen as an enabler as carer felt they had more experience and related better with the content (carer who continued with intervention after end of the study). For others, the increased disability and greater needs of the PwMND meant that carers could not engage with MiNDToolkit due to reduced time. Other external factors played a role in engagement, such as carers\u0026rsquo; own health state or other family members\u0026rsquo; needs.\u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;So there was the first lot of modules that I did over three months, which actually I didn\u0026rsquo;t quite get to the end of because various other things were happening. I had my own health issues and everything and so I didn\u0026rsquo;t quite get to the end. And then suddenly the three months was up.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 09\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003e4.2. Using the platform - ease of use\u003c/h2\u003e \u003cp\u003eCarers found the platform modules to be accessible as they were short, could be paused, and could be fit around other duties, including nighttime hours. The platform was felt to be straightforward, and reminders were useful for continued engagement. Its online nature was also seen as a positive aspect for repeating things, and for continued access.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Whereas the MiNDToolkit, it was in nice, easy, bite size portions, if you like, to coin a phrase. But yeah, nothing took more than sort of like 10,15 minutes which was great for me. So I could do in between, you know, household jobs or I could even access it at work and do a couple of modules during my lunch hour or in a break. So it\u0026rsquo;s that kind of, you know, short, only about five, 10 minutes long which makes it more accessible I think\u0026rdquo;.\u003c/em\u003e\u003cb\u003eCarer 02\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;But as I say, I have now done it all and some of it several times, so yeah, it was certainly worth doing so I\u0026rsquo;m pleased I did it. I was very glad to get the opportunity to do it again, or to go back and revisit it, and I certainly found it beneficial because there was, as I say, well all the cognitive changes were things that I didn\u0026rsquo;t know about and wasn\u0026rsquo;t expecting. And although I had noticed changes, I certainly, at that point, hadn\u0026rsquo;t connected them or hadn\u0026rsquo;t realised other people did that sort of thing as well, you know.\u0026rdquo;\u003c/em\u003e\u003cb\u003eCarer 09\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eSome carers took the intervention into new directions that had not been intended at the conceptual phase. For example, they shared their login with their children, or even showed the content to the PwMND.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;So I gave it to him and said, \u0026ldquo;Look, this is,\u0026rdquo; because he couldn\u0026rsquo;t understand why things were happening. And I said, \u0026ldquo;Well look, this is why this is happening, look at this three-minute video on empathy and apathy.\u0026rdquo; And he watched it and felt so much better because he had seen it actually explained to him.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 10\u003c/b\u003e\u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Because I sort of thought it might be useful for my son to have a look at it because that\u0026rsquo;s what I \u0026ndash; yeah [\u0026hellip;] you know, the explanations I thought maybe would be useful for him, I could get extra, yeah.\u0026rdquo;\u003c/em\u003e \u003cb\u003eCarer 04\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003e4.3 Reinforcement by HCPs\u003c/h2\u003e \u003cp\u003eCarers perceptions of their need for reinforcement by HCPs were varied. Those who received reinforcement seem to have appreciated it coming from a professional with whom they already had a relationship of trust, or whose background training were more fitting in the carers\u0026rsquo; view. Some who did not receive reinforcement wished they had had, while others reported that they do not think they would have needed it.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026rsquo;ve discussed it with are the Occupational Therapist and the Neurology Nurse. They\u0026rsquo;re probably the only two people I have talked to about it and they have ex \u0026ndash; you know they come here and see him, they\u0026rsquo;ve experienced some of his behaviour. I suppose with other people, I don\u0026rsquo;t know, like Speech Therapist, Physio, etc, they see him as a patient and I\u0026rsquo;m normally there, so it\u0026rsquo;s not a situation where we\u0026rsquo;re sitting having a discussion about, you know, it hasn\u0026rsquo;t come up. It\u0026rsquo;s not part of their remit anyway I suppose, you know, they\u0026rsquo;re doing this, whatever they do. So it\u0026rsquo;s not that I\u0026rsquo;ve chosen not to discuss it with them, it\u0026rsquo;s just not been appropriate.\u0026rdquo;\u003c/em\u003e\u003cb\u003eCarer 09\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003eTheme 5: Future implementation\u003c/h2\u003e \u003cp\u003eAll carers interviewed had suggestions for improving MiNDToolkit, demonstrating strong engagement and keen interest in promoting access to others in future.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003e5.1. MiNDToolkit Content\u003c/h2\u003e \u003cp\u003e Carers had excellent suggestions for new modules that could be added. These included information on emotional lability, changes in relationships, and transitioning to a care home. One carer suggested including more explicit examples applicable to PwMND with bulbar symptoms.\u003c/p\u003e \u003cdiv id=\"Sec25\" class=\"Section3\"\u003e \u003ch2\u003e5.2. Delivery/Hybrid\u003c/h2\u003e \u003cp\u003eCarers were unanimous that the delivery of MiNDToolkit should be maintained as hybrid, combining online and face-to-face learning from HCPs, but suggested that reinforcement could be an option based on the carer\u0026rsquo;s needs and wishes.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I think initially online was fine because [\u0026hellip;] when you do it online, you can do what you\u0026rsquo;ve got time for and then go back, whereas if you were face-to-face you wouldn\u0026rsquo;t have that option [\u0026hellip;] But I think perhaps do it in two parts, do part online and part face-to-face\u0026rdquo;.\u003c/em\u003e \u003cb\u003eCarer 05\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec26\" class=\"Section3\"\u003e \u003ch2\u003e5.3. Expansion, and what did not work so well\u003c/h2\u003e \u003cp\u003eCarers wanted to encourage other carers to use MiNDToolkit in future. They also wondered if volunteers could be involved in MiNDToolkit, through reinforcement.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I mean I would certainly encourage other people to do it. And sort of whether it\u0026rsquo;s worth trying to encourage the medical, the health professionals to encourage carers as well as just sending out a paper, you know, invitation.\u0026ldquo;\u003c/em\u003e \u003cb\u003eCarer 09\u003c/b\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eBut not all elements of MiNDToolkit were well accepted. Some carers felt that they were not IT savvy and would have preferred an HCP-based delivery, with paper resources. Others would have liked the flexibility to navigate the modules as they wished \u0026ndash; the delivery was offered in a certain order. The flexible navigation can be set and taken forward in the next MiNDToolkit study.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003e Our study confirmed that carers\u0026rsquo; experience of BehSymp can be emotionally distressing, in particular when out of context and perceived as personal reactions - and not part of MND symptomatology. By using MiNDToolkit, however, carers reported learning and making sense of BehSymp, understanding that the full picture of MND goes beyond motor deficits. This process supported acceptance and management of BehSymp and was appreciated when accompanied by HCP support \u0026ndash; even though some carers interacted with the MiNDToolkit intervention solely via the bespoke platform.\u003c/p\u003e \u003cp\u003eCarers\u0026rsquo; challenges in dealing with BehSymp in MND are compounded. Carers not only have to deal with known triggers of emotional distress in MND, such as a threatened future and keeping up with multiple changes\u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e, but they also experience behaviours from the PwMND which are not consistent with the person they know\u003csup\u003e\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u003c/sup\u003e. In our study, rigid and obsessive behaviours made routines inflexible, disinhibition caused embarrassment, and lack of flexibility led to conflict between the carer and the PwMND. Relationships appear to become strained, with greater sense of loss\u003csup\u003e\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u003c/sup\u003e. Indeed, our findings align with other studies where BehSymp were identified as key factors influencing carer burden\u003csup\u003e\u003cspan additionalcitationids=\"CR13 CR14\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThe importance of having a MND professional involved in an intervention such as MiNDToolkit was highlighted by the majority of carers, even by those who did not discuss MiNDToolkit content in detail. HCP involvement appeared to lead to greater validation of the intervention, making it legitimate \u0026ndash; especially in the context of other online/social media resources, where some carers feel that these may not be trustworthy. It is interesting, however, that some HCPs involved in the study worried that highlighting challenges with behavioural symptoms would be burdensome to carers\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eHaving HCP involvement in the programme also seemed to strengthen the connection of the carer with the MND service involved with the PwMND who they provide care for. As services are mostly focused on the PwMND, carer engagement with MiNDToolkit opened or reinforced a connection between the HCP and the carer, creating safe spaces for carers to discuss their own concerns and that may not normally feature in regular MND appointments. This triangulation seemed to be valuable to carers. Indeed, other MND studies showed overwhelming positive responses from carers\u003csup\u003e\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u003c/sup\u003e in engaging with therapies and HCPs in communicating\u003csup\u003e\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u003c/sup\u003e well and supporting their experience of caring for a PwMND\u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eAn important aspect of the psychoeducational intervention was the involvement of the trained HCP, which varied per site\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e. Carers unanimously reported that the intervention should remain hybrid, but not all were certain that they would have wanted regular HCP input \u0026ndash; while others would have preferred greater HCP input. It appears that a modulation of HCP involvement would be ideal, with HCPs responding to carers\u0026rsquo; need in a dynamic way. Nuanced communications, tailored for the carer, seems to be a good way forward in response to carers\u0026rsquo; experiences reported in MiNDToolkit and the scientific literature\u003csup\u003e\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eMiNDToolkit appeared to be well accepted by most carers, with some expanding its reach by providing the platform login to other family members or even showing modules to the PwMND. While these steps were not intended or described in our research protocol, they seem to suggest that carers found the content helpful. Accessibility through the online platform was confirmed via unusual hours of use, e.g., very early or very late in the day. Unlimited online access seems to encourage carer participation, as it offers flexibility and carer control; this enhanced online accessibility has also been shown in other online interventions for carers\u003csup\u003e\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e,\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eCarers were also keen to provide suggestions on how to enhance the MiNDToolkit, most noticeably in relation to the role of the HCP as discussed earlier. Other more practical suggestions were also mentioned. For example, carers asked for new modules on mood lability, relationship changes, and transitions in care, as well as an accompanying paper version of the content to increase accessibility and as a memory aid, similar to HCPs\u0026rsquo; request\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e. These can be addressed for a future trial.\u003c/p\u003e \u003cp\u003eLimitations of our study include its online nature. As MiNDToolkit was transformed to be a full online intervention because of the COVID pandemic, access was restricted to those willing to engage with an online intervention. Most carers were female, thus limiting our interpretations of MiNDToolkit\u0026rsquo;s acceptability by male carers. However, strengths in our study include a diverse ethnic cohort, and participation high completion rates.\u003c/p\u003e \u003cp\u003eIn summary, the MiNDToolkit psychoeducational intervention seems to be acceptable by carers of PwMND with additional behavioural symptoms. The intervention helped carers expand their understanding of MND, supporting acceptance of symptoms and enabling carers to modify their own behaviour and apply newly learned strategies.\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eFigure 1\u003c/strong\u003e \u003cp\u003eThemes and sub-themes identified in carers\u0026rsquo; interviews exploring experiences of behavioural symptoms before and after MiNDToolkit.\u003c/p\u003e \u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e: London Queen Square Research Ethics Committee (19/LO/0692, IRAS260290). All participants consented to participate in this research project.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent for publication:\u003c/em\u003e as per ethics approval\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAvailability of data and materials:\u003c/em\u003e Due to the sensitive nature of the interview data, interviews have not been deposited in public archives. Please contact the corresponding author if interested in developing research collaborations.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCompeting interests:\u003c/em\u003e EM and TKC were funded by the MND Association. EM was funded by the NIHR Clinical Research Network East of England, the NIHR Applied Research Collaboration East of England, and MND Scotland. EM provided consultancy for LifeArc. EM is a member of the MND Association Healthcare Research Panel and NIHR DLAF committee. SH reports no disclosures.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding\u003c/em\u003e and Acknowledgements: This project was funded by the Motor Neurone Disease Association UK, with additional support from the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE), and the Clinical Research Network East of England. EM is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.\u003c/p\u003e\n\u003cp\u003eAuthors' contributions: TKC led on the study design and data collection. TKC and EM worked together in the data analysis, with regular contributions from SH. EM prepared the first draft with significant contributions from SH and TKC. EM prepared figure 1. All authors reviewed, edited, and approved the manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eLerum SV, Solbraekke KN, Frich JC. Family caregivers\u0026apos; accounts of caring for a family member with motor neurone disease in Norway: a qualitative study. \u003cem\u003eBMC Palliat Care\u003c/em\u003e. Feb 24 2016;15:22. doi:10.1186/s12904-016-0097-4\u003c/li\u003e\n \u003cli\u003eHardiman O, Al-Chalabi A, Chio A, et al. Amyotrophic lateral sclerosis. \u003cem\u003eNat Rev Dis Primers\u003c/em\u003e. Oct 20 2017;3:17085. doi:10.1038/nrdp.2017.85\u003c/li\u003e\n \u003cli\u003eMioshi E, Lillo P, Kiernan M, Hodges J. Activities of daily living in motor neuron disease: role of behavioural and motor changes. \u003cem\u003eJ Clin Neurosci\u003c/em\u003e. Apr 2012;19(4):552-6. doi:10.1016/j.jocn.2011.07.042\u003c/li\u003e\n \u003cli\u003eConroy E, Kennedy P, Heverin M, et al. Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties. \u003cem\u003eBrain Sci\u003c/em\u003e. Aug 20 2021;11(8)doi:10.3390/brainsci11081094\u003c/li\u003e\n \u003cli\u003eHarris M, Thomas G, Thomas M, et al. Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis. \u003cem\u003ePalliat Support Care\u003c/em\u003e. Apr 2018;16(2):228-237. doi:10.1017/S1478951517000700\u003c/li\u003e\n \u003cli\u003eZago S, Lorusso L, Aiello EN, et al. Cognitive and behavioral involvement in ALS has been known for more than a century. \u003cem\u003eNeurol Sci\u003c/em\u003e. Dec 2022;43(12):6741-6760. doi:10.1007/s10072-022-06340-0\u003c/li\u003e\n \u003cli\u003eRenton AE, Majounie E, Waite A, et al. A hexanucleotide repeat expansion in C9ORF72 is the cause of chromosome 9p21-linked ALS-FTD. \u003cem\u003eNeuron\u003c/em\u003e. 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Aug 2020;21(5-6):459-462. doi:10.1080/21678421.2020.1752249\u003c/li\u003e\n \u003cli\u003eTrucco AP, Backhouse T, Mioshi E, Kishita N. Factors associated with grief in informal carers of people living with Motor Neuron Disease: A mixed methods systematic review. \u003cem\u003eDeath Stud\u003c/em\u003e. Feb 2024;48(2):103-117. doi:10.1080/07481187.2023.2191351\u003c/li\u003e\n \u003cli\u003eCui B, Cui LY, Liu MS, et al. Behavioral Symptoms in Motor Neuron Disease and Their Negative Impact on Caregiver Burden. \u003cem\u003eChin Med J (Engl)\u003c/em\u003e. Sep 5 2015;128(17):2295-300. doi:10.4103/0366-6999.163393\u003c/li\u003e\n \u003cli\u003eLillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients\u0026apos; behavioral changes than physical disability: a comparative study. \u003cem\u003eBMC Neurol\u003c/em\u003e. Dec 7 2012;12:156. doi:10.1186/1471-2377-12-156\u003c/li\u003e\n \u003cli\u003eChio A, Vignola A, Mastro E, et al. Neurobehavioral symptoms in ALS are negatively related to caregivers\u0026apos; burden and quality of life. \u003cem\u003eEur J Neurol\u003c/em\u003e. Oct 2010;17(10):1298-303. doi:10.1111/j.1468-1331.2010.03016.x\u003c/li\u003e\n \u003cli\u003eSilverman HE, Ake JM, Manoochehri M, et al. The contribution of behavioral features to caregiver burden in FTLD spectrum disorders. \u003cem\u003eAlzheimers Dement\u003c/em\u003e. Sep 2022;18(9):1635-1649. doi:10.1002/alz.12494\u003c/li\u003e\n \u003cli\u003eOlesen LK, la Cour K, With H, Mahoney AF, Handberg C. A cross-sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments. \u003cem\u003eBMC Health Serv Res\u003c/em\u003e. May 24 2022;22(1):697. doi:10.1186/s12913-022-07986-4\u003c/li\u003e\n \u003cli\u003eMioshi E, Grant K, Flanagan E, et al. An online intervention for carers to manage behavioural symptoms in Motor Neuron Disease (MiNDToolkit): a randomised parallel multi-centre feasibility trial. \u003cem\u003e(under review)\u003c/em\u003e. 2024;\u003c/li\u003e\n \u003cli\u003eKatangwe-Chigamba T, Flanagan E, Mioshi E. The implementation of MiNDToolkit intervention for the management of behavioural symptoms in MND by healthcare professionals: a mixed methods process evaluation. \u003cem\u003eUnder review\u003c/em\u003e. 2024;\u003c/li\u003e\n \u003cli\u003eMoore GF, Audrey S, Barker M, et al. Process evaluation of complex interventions: Medical Research Council guidance. \u003cem\u003eBMJ\u003c/em\u003e. Mar 19 2015;350:h1258. doi:10.1136/bmj.h1258\u003c/li\u003e\n \u003cli\u003eByrne D. A worked example of Braun and Clarke\u0026rsquo;s approach\u003c/li\u003e\n \u003cli\u003eto reflexive thematic analysis. \u003cem\u003eQuality \u0026amp; Quantity\u0026nbsp;\u003c/em\u003e2022;56:1391-1412.\u003c/li\u003e\n \u003cli\u003ePinto C, Geraghty AWA, Yardley L, Dennison L. Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study. \u003cem\u003eBMJ Open\u003c/em\u003e. Aug 17 2021;11(8):e044724. doi:10.1136/bmjopen-2020-044724\u003c/li\u003e\n \u003cli\u003eWaldron EJ, Barrash J, Swenson A, Tranel D. Personality disturbances in amyotrophic lateral sclerosis: a case study demonstrating changes in personality without cognitive deficits. \u003cem\u003eJ Int Neuropsychol Soc\u003c/em\u003e. Aug 2014;20(7):764-71. doi:10.1017/S1355617714000459\u003c/li\u003e\n \u003cli\u003eTrucco AP, Khondoker M, Kishita N, Backhouse T, Copsey H, Mioshi E. Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone Disease: The impact of disease symptomatology. \u003cem\u003e(under review)\u003c/em\u003e. 2024;\u003c/li\u003e\n \u003cli\u003evan Groenestijn AC, Schroder CD, Visser-Meily JM, Reenen ET, Veldink JH, van den Berg LH. Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial. \u003cem\u003eAmyotroph Lateral Scler Frontotemporal Degener\u003c/em\u003e. 2015;16(5-6):309-15. doi:10.3109/21678421.2015.1038276\u003c/li\u003e\n \u003cli\u003eGenuis SK, Luth W, Bubela T, Johnston WS. What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project. \u003cem\u003eMuscle Nerve\u003c/em\u003e. Sep 2023;68(3):286-295. doi:10.1002/mus.27935\u003c/li\u003e\n \u003cli\u003eContreras M, Van Hout E, Farquhar M, et al. Internet-delivered guided self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS): a qualitative study of carer views and acceptability. \u003cem\u003eInt J Qual Stud Health Well-being\u003c/em\u003e. Dec 2022;17(1):2066255. doi:10.1080/17482631.2022.2066255\u003c/li\u003e\n \u003cli\u003eOlesen LK, la Cour K, Thorne S, With H, Handberg C. Perceived benefits from peer-support among family caregivers of people with amyotrophic lateral sclerosis and cognitive impairments in a palliative rehabilitation blended online learning programme. \u003cem\u003eJ Eval Clin Pract\u003c/em\u003e. Jun 2023;29(4):602-613. doi:10.1111/jep.13808\u003cem\u003e\u003c/em\u003e\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-neurology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurl","sideBox":"Learn more about [BMC Neurology](http://bmcneurol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurl","title":"BMC Neurology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"MND, ALS, FTD, carers, behavioural symptoms, neuropsychiatric symptoms","lastPublishedDoi":"10.21203/rs.3.rs-4281327/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4281327/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground: \u003c/strong\u003eto explore carers’ experiences of behavioural symptoms in Motor Neurone Disease (MND), before and after using the MiNDToolkit, a novel online psychoeducational intervention to support management of behavioural symptoms (BehSymp) in MND. The study also investigated carers’ views and acceptability of MiNDToolkit.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e: A qualitative process evaluation of carers engagement with, and acceptability of, the MiNDToolkit conducted using semi-structured interviews with carers (n=11). All interviews were audio-recorded, professionally transcribed verbatim and analysed thematically.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: five themes were identified: 1) In the dark – carers’ experiences and reactions to BehSymp; 2) Others can see: the role of HCPs in identifying symptoms – and perceived opportunities for carers to receive support; 3) Shedding light: carers implementation and perceived impact of the MiNDToolkit content; 4) Acceptability and carers’ engagement with MiNDToolkit; 5) future implementation. Carers’ experience of BehSymp was particularly distressing when symptoms were apparently out of context. MiNDToolkit appeared to support learning that BehSymp were part of MND. Content resonated with carers, who reported learning about the full picture of MND, which led to acceptance and use of newly learned strategies. Engagement with the platform was good, with varied input from HCPs. Greater and nuanced involvement from HCPs seem important to support management of BehSymp. Recommendations for a full-scale trial emerged, including adding a paper booklet to accompany the intervention and creation of new modules on emotional lability, changes in relationships, and transitioning to a care home.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e: MiNDToolkit was acceptable to carers overall. 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