ERNICA Research Collaboration - Mental health of parents in the context of EA/TOF

Good afternoon, everyone. Um, Possibly there will be some more people joining us, but um. As we said, we would start at 4 o'clock. And um To start introducing ourselves, I'm Andre Riedman. I'm a healthcare psychologist in the Netherlands in the Erasmus Medical Center, Sophia Children's Hospital, where I'm uh doing clinical work with patients and parents of patients, but I'm also involved in, in research and um R, would you like to say. A word to introduce yourself as a second moderator. Yes, of course. Uh, well, my name is R von Steenberg. Uh, I'm working as a project manager for Ernica. Uh, I started 3 months ago, and, uh, yeah, I'm also working for the Quality of Life Working Group, and, uh, with this working group we're now hosting this webinar. So welcome you all. And uh if you have any technical problems uh with your sound or image or anything, you can contact Roma and she will respond to that uh with the same email address that you uh told her that you would attend this working group. So you're in the working group of the Quality of life you're in the webinar of the Quality of Life Working group, um, and we're with about 6 people in this working group, um. Uh, oh, before we start, I need to tell you that this session will be recorded. Um, if you don't like yourself to be, um, on the recording, which will be put by Rme on, uh, YouTube, then you can switch off your camera so there won't be, uh, anything of you, um, to be seen apart from your name possibly, um. We will start with the content of this working of this webinar uh by another member of this quality of life working group. She's Doctor Voko Wallace. She's a clinical psychologist and senior lecturer at the University of Bath. And um She is next to a specialized pediatric health psychologist, also an adult survivor of esophageal atresia with or without tracheoesophageal fistula, which from now on we will abbreviate to EAFF. Um, she's involved in research into mental health and EAFF amongst parents of children born with EATF, um, and into the transition to adult health services and adults born with EATF, and she's doing this together with Ella Bailey, who will be our second speaker. She is a clinical psychologist in training, um, in the same program where Doctor Wallace is, um. Uh, the lecturer, uh, she, so she's also, uh, in training at the University of Bath, and she's got a special interest in health psychology. Um, the floor is for Doctor Vuo Wallace. Thank you very much for your uh uh lovely introduction, um, Andre. I will now share my screen. So I will be talking about the mental health of parents and caregivers in the context of EHF and Ella will be talking a bit about our development of digitalized psychological support. Um, I have prepared this talk today, um, using different kinds of expertise. As Andrea said, I'm an adult survivor of AIDSO myself, um, with experience of what that entails, but also I'm a clinical psychologist and researcher. in this field. Um, this has led to, um, many, um, um, different opportunities in terms of working with patient groups and, um, condition-specific, um, working groups, and I feel very privileged to be able to, um, give my expertise to these different, um, patient groups and to improve the life of people born with OHF. But today we'll be focusing on the mental health of parents in the context of EA. Um, if you first look at what does research tell us about parental mental health in the context of child's illness in general, um, we all know that caring for a chronically ill child requires additional care from parents, including daily medical care, hospital appointments, and financial management. It impacts parents' employment, social life, and health-related quality of life. It's not surprising then that parents report poorer mental health, more parenting stress, and increased anxiety and depression. And why this is important is that parental mental health impacts both parental and child well-being. Um, um, the anxiety and depression that parents might experience predict child's mental health and development, and also poor parental mental health and parenting stress can lead to maladaptive parenting practices and interfere with effective illness management. So supporting parents is really important. Many parents who experience the child. Um, having a, a serious medical condition that requires, um, um, surgical care, um, find themselves feeling very overwhelmed and traumatized by the experience. Um, lots of research has been done in this area, and it has been found that parents' PTSD, which is the post-traumatic stress disorder, Um, uh, is increased in parents who, whose children, um, have had, um, admission to pediatric intensive care unit. Um, This is really understandable because um when you think about a child being born and then the experience being so different than what they expected, um, and with the fear of loss and so on, um, it, it can be a really difficult time for, for the parents. In terms of EHF, um, in one study, nearly 60% of parents, um, reported PTSD symptoms above the clinical, um, range. What is important to think about when talking about, uh, post-traumatic stress. Is that PTSD can also lead to post-traumatic growth, which is positive change after a traumatic event, but less in parents with increased depression. So it's really important to think about um and notice depression in parents and caregivers. So, then, when we look at what might be the contributing factors to parental mental health when their children have got um physical, physical illness. In terms of EA, um, we, we have found that child AIDS is one contributing factor. So, um, it makes sense. That when the children grow a bit bigger, um, parents' mental health also improves. Other sort of condition-specific factors that have been identified in research are severity of SAS EA, the presence of associated anomalies, lung infections, and feeding problems. There are other contributing factors as well, and when we look at the family as a, as a whole, um, having a child with, with complex illness impacts the whole, whole family's well-being. It has been found in research that mothers report generally lower mental health and more PTSD compared to fathers, which is again understandable because often they might do more of the caring roles. Um, uh, literature reviewer has also found that, um, Parents' mental health difficulties around a child's illness might be more associated with parents' younger age, social problems, problems in daily life, and parenting stress than child-related medical characteristics. Again, which is understandable because when you think about the different layers of, of stresses in people's life, um, if there is a child's illness as well as other difficulties, then the, the stress can accumulate. Interestingly, in terms of EA, it has been found that parents' post-traumatic stress symptoms, they are related to parents' subjective evaluation of their child's health status and quality of life rather than the objective severity of their child's EA, which really highlights the importance of supporting parents and caregivers during these times. Um, then, um, um, when I started working with, um, the different patient charities, I was, I was really struck by, um, the need for a lack of psychological support among survivors of EA and parents of children born with EA. This led to a number of research projects that I have either conducted myself or supervised um through uh uh student research projects. One of the biggest ones of them is the parents who survey. Um, to which 240 parents took part from 17 different countries. And even though, um, the survey design might have some limitations, but it's a great way of getting a large amount of data in a, in a rare condition. So this has led so far to 44 peer-reviewed articles on mental health in families affected by EA. And today, I'll be talking about 2 of them in more detail. So one of the key papers looked at um anxiety and depression in parents of children born with EA. Um, we were aiming to really look at the um child's medical characteristics and parental factors in association with the parental mental health. What we found Was that nearly 70% of parents reported anxiety and nearly 40% reported depression. These are very high numbers, but one needs to remember that they included mild levels of anxiety and depression as well, so the more severe levels were much lower. We also found that in terms of SARS medical characteristics, the SARS feeding problems was one of the key things that was associated with anxiety and depression. Um, and other factors were parental factors such as parents' younger ages, perceived lack of support, caring stress, and financial worries, again, um, highlighting the importance of, of support in the SARS fighter network. These, these findings led into the next paper, which was a qualitative paper looking at the parental experiences and psychological impacts of feeding their child born with EA and looking at What, um, what these experiences might be from the parents' perspectives. We know that establishing positive feeding interactions and practices are important for both parental and child mental health and for child health. So it was really important to look more into this um and to hear the parents' experiences. So, um, in terms of the themes that were coming up, um, there was lots of experiences of anxiety, trauma, and loss. Uh, Parents talked about the fear of feeding and their child choking. They talked about their, their traumatic experiences and a sense of loss and sadness that their experiences had not been what they had expected it to be. The parents also talked about feeling isolated and unsupported. There was, um, they felt that people didn't understand them, and that sort of real loneliness came through in the participants' stories. On the other hand, people talked about how support was really important. They were supported by information, supported by others, both professionals and family members, and that helped them to develop resilience and coping. Um, this led to recommended guidance around what would support for parents look like around EA-related feeding difficulties, and that's what Ella is going to talk to us more about, um, and, and, um, in. Personally, to sort of the practical guidance about feeding and safe feeding practices, but we found through this research that it's really important to help parents to um on how to recognize and cope with uncomfortable emotions and difficult feelings during feeding. This has also led into sort of thinking about developing the digitalized psychological support more widely, um, and, and recognizing that most of the low-intensity psychological support content could be shared across different health conditions. And some of the Ernica, um, um, videos, um, are already a really good example of this. Um. Then to, to this, um, basic psychological support content, we can add a symptom-specific content, which again, might, we might be able to share across different conditions. Um, also, it's important to recognize that Um, psychological self-help materials, so to consider the systemic and family factors, and that we should be able to, uh, signpost the more complex presentations to hospital psychology teams or psychology services, um, which, which is really important. And here are some key, key references. And now, uh, thank you very much for listening, and I will hand over to um Ella who will continue. Thank you, I'll just share my slides. OK. Hopefully everyone can hear me still, but um if not, do give me a shout. So yeah, I'm gonna be talking about, like Frocco said, um, we've sort of got a rationale for thinking about psychological support for particularly feeding difficulties in EA so as she spoke about parental mental health and responses to a child's health condition can impact both the child's health and mental health. Um, and we know that educational interventions can positively impact parental emotional regulation and promote parental confidence and skills in managing their child's feeding. So that's why we've been looking at developing a patient leaflet and video for parents of children born with EA. So that's involved reviewing previous literature, as well as consultation with patients and professionals. Um, so what we're gonna look to do is to evaluate that. So that'll be with an online survey, um, and also questions about the acceptability of the leaflet and video. So my plan for today is I'm gonna read you out a draft of the content that we're hoping to use for this video and leaflet. um and then what I'm gonna ask you to do is split off into small groups and discuss what you thought about the script. um so the draft is based on previous literature, but we'd like to get your patient and professional views and feedback so we can further develop it before we make the final script for the video. So before I start reading out the script, here's some questions that would be really good for you to have in mind as I'm reading the script through. So if you could think about what you liked about the script, if there's anything that you would change, so anything you would like to add in or anything that you think should be taken out. Um, what images would be helpful at what points in the video, so they're going to be quite boring slides without many pictures on, um, because it'd be really helpful to know what sort of images you think could be helpful. So there's little slide numbers in the corner of the slides, um, so you could always jot down the number and write down if you think of anything helpful. And then just thinking about how helpful would a video made using this script be for parents of children with EA and also for healthcare professionals, but we're open to any other feedback as well, these are just some prompts. So I'm going to read through the script now. Positive feeding or meal term experiences are important for you and your child. These experiences help your child to develop physically and socially, and give you a sense of achievement as a parent. When a child has a feeding or swallowing difficulty, what should be an enjoyable, exciting experience can become stressful and anxiety provoking. This information aims to give you some ideas on how you can help yourself and your child to manage these stressful times. The information has been developed using research findings, the experience of healthcare professionals, and learning from other caregivers of children with EA. There will be information for further help and support at the end of this video. It is quite natural to feel worried and anxious when feeding your child with EA. These difficulties can be distressing and not what you had hoped or expected for feeding your child. Mealtimes can become stressful and result in family tension. As children need to eat or feed, eat or feed multiple times a day, the anxiety can feel inescapable and leave you feeling low and powerless. It can be difficult to find people who are able to help and understand, leaving you feeling overwhelmed and isolated. These are common and understandable feelings when adapting to the impact of your child's complex health condition. Feeding children born with EA can be particularly difficult. EA complications can impact feeding and swallowing throughout the early years, causing episodes of gagging, coughing and having food stuck in the child's esophagus. These episodes can be very distressing for you to witness and act upon, even though they rarely cause difficulty in breathing, it is important to familiarize yourself with the first aid techniques. Each new step in feeding development, such as moving from breast or bottle feeding to purees and from purees to food with lumps, can bring new challenges and fears. It is important to recognize that even though mealtimes can be stressful, you can help your child immensely by looking after your own mental health and promoting the enjoyable social side of mealtime. This can be difficult to do when feeling worried and overwhelmed, but with support you can build your own and your child's confidence in different ways. To look after yourself, it might be helpful to first focus on simple steps to try and eat and sleep well, get regular exercise, be outside in nature and connect with other people. Patient charities and support groups can be an excellent way to connect with other parents going through similar experiences to you. Developing psychological flexibility can also be helpful when dealing with something very difficult. Psychological flexibility means being able to do what is important to you in the present moment, even if that might mean experiencing uncomfortable feelings, thoughts, and bodily sensations. Having experienced traumatic feeding situations in the past can lead you to focus on these memories and thoughts related to the worst possible outcomes rather than paying attention to what is happening right now. This can make feeding your child very difficult and stressful for you. Being able to notice these thoughts, such as my son is gonna have a sticky feelings like anxiety. Without reaction to them can be a very helpful step towards making meal times more enjoyable. It might be helpful to imagine a place where you can put your worrying thoughts during feeding. This might be a worry shelf, or floating clouds, or leaves in the stream. This technique can help you stay in the present moment with your child so that you are able to read their feeding cues, such as when they are opening their mouth, and recognize appropriate times to take a step back, such as when you notice they are taking food from your hand. And encourage independence. Building a close, secure relationship with your child will help their development in many ways. Difficult feeding experiences can affect this relationship, but focusing on rebuilding the bond will help your child to trust you and gain confidence as you guide them through new and challenging stages of feeding. A good way to build positive mealtimes or feeds is to think about how you and your child are feeling before you start a particular feed or meal. If you are feeling particularly stressed or tired, you are less likely to be able to stay calm and encouraging during feeding. Checking in with yourself by asking what emotions am I feeling and what is my current energy level, what emotions is my child expressing, what is their energy level, and how well are they physically today can be particularly useful in helping to decide whether it is the right day to try a new food or whether it is best to go with an easier option and focus on self care and reaching out for support from family and friends. If you are feeling stressed, it might be helpful to take a few minutes to recognize your thoughts, feelings, and bodily sensations and engage in relaxation exercises before a feed or meal time. Simple breathing exercises can be very helpful in calming the body and making it easier to cope with stressful situations. When things are difficult with feeding, it's important to be kind to yourself and recognize what a difficult task you're tackling. For example, if both you and your child are very tired and hungry, it might be best to choose the easiest way for you both to eat and rest and then try something more challenging next time. This is easier when you receive understanding, encouragement and praise for your efforts from family, friends, and healthcare professionals. Sometimes, with slightly older children, earlier difficult experiences might lead to difficult mealtime behaviors. It's important to try and stay calm and ignore negative behaviors at mealtimes, such as spitting out or throwing food. Although this can be difficult to ignore, making a fuss of these behaviors can actually make your child more likely to repeat them. Accepting that playful mealtimes might get messy, preparing with plastic sheets, bibs and aprons, and agreeing to not focus on cleaning whilst eating or playing, can help reduce the stress a little. Try and find opportunities to praise your child for positive eatings and mealtime behaviors. It might help to break the feeding process into very small goals so that you are able to notice the smallest achievements and celebrate them. This might include allowing food to be put on the plate. Picking up food, touching it to their mouth, putting it in their mouth, and swallowing. It's important to be specific with praising, for example, great chewing, or well done for trying. Having role models is important too. Positive behaviors from siblings or family members can be encouraged using positive noises and phrases like, um, this is my favorite and this tastes yummy. Playing games at mealtimes is a great way to make the experience fun for everyone. If your child is younger, simple classics like pretending the fork or spoon with the food on is an airplane slowly flying around before landing in their mouth, can work well. Slightly older children might enjoy a tea party setup at mealtimes, where their favorite toys, dolls and teddy bears can also attend and enjoy some pretend food and drink. Another way to make things fun is to set up a pretend restaurant in the home, make menus for the meal, and serve the food as if you are the waiter. It might be fun for your child to get creative and make placemats for each family member, or create some decorations for the table. If your child is old enough, they might like to fill part of the food preparation, for example, finding foods at the shop, getting the ingredients from the cupboards, helping to stir food, or just sitting with you whilst you prepare the meal. Raising a child with EA is not always easy, particularly when it comes to eating and feeding. Sometimes it is necessary to get further help from family, friends, patient charities or healthcare professionals. It is important to notice signs when further help is necessary. These might include feeling very low for longer than a couple of weeks, having distressing thoughts about not coping, or worrying about your child so much that you're not able to stay calm, positive and encouraging during feeding. There are lots of organizations and charities that provide a supportive listening service, which can be very helpful. It's also important to let your child's healthcare team and your doctor know that you're struggling. Most children's feeding and swallowing difficulties improve with time and with support, you can adapt to the way your child eats, find ways to cope with difficult situations and enjoy the feeding and eating times with your child and family again. When parents of children with EA were asked for one piece of feeding advice they'd give another parent, many of them said. Give your child time to develop at their own pace, try not to compare them to another child with or without EA as you and your child are unique. You can find a path that works for both of you. But giving you and your child time is very valuable. Trust your instincts and ask for help if you feel your child is struggling more than they need to be. Understanding why your child's eating or drinking is a certain way can go a long way to easing your worry and making meal times more enjoyable for everyone. Um, and then we'll include some references and further reading, um, so including things like Toffs in there, um, and further mental health support, specifically in the UK we've got some different references for that. OK, so what we're gonna ask you to do now, um, is go into some small groups. Um, there's a menti meter, I'm not sure if everyone's used mentiter before, um, but you can either scan this QR code on the screen or you can at the bottom go to www.menti.com and enter the code on the screen. Um, so what we're gonna ask you to discuss in the small groups and then put into the menti meter, which is a questionnaire. Is, how did you find the draft content for a psychoeducational film, as a patient, parent or a health professional. Um, we'd like you to think about what you liked about it and what you would change and just any other feedback that you might have. So we're going to give everyone 10 minutes to discuss that in small groups. Welcome everybody. I was really shocked to find after 9 minutes that we already had passed 9 minutes, so we're thrown back into this plenary meeting again. And I, I think there's a lot of um information has been exchanged at least in our group Buco, how would you like to carry this further? Yes, thank you. Um, it, it was a great, uh, conversation in our, um, our group. And now we've got 15 minutes left, and, um, I thought that we could, um, look at the Mentimeter results and discuss at the same time. So, uh, it would be really, uh, great if you, um, would like to, if one of your groups, uh, would like to share some of the main themes that were, were discussed. We would really value that because it, it will help us to further develop, um, this, this script and make sure that we have listened to. Um, both, uh, the patient representatives, health, healthcare professionals, and so on. So let me share the, um, screen here. So, um, now you've got a chance to go into the mtimeter still. So the code is 463. 546-54. Um, so I'll go back to, if you want to use the QI code, um, you can do that. And could, could everyone put themselves as mute if they are not talking, please, there's quite a lot of background noise. That's great, thank you. So, um, so who, who are we here today? Um, they, mostly, uh, patients or parents, um, 3 healthcare professionals, no students, um, and 1, patient and healthcare, care professional. And when we are talking, please do, um, fill it, fill it in because we'll be able to use this later, later on as, as well. So if you haven't had a chance yet, we would really value that. Um, Then thinking about what, what did you like about the script. Very informative. It felt it was pitched well, acknowledging the range of feelings that a parent may experience and the feeding challenges a child may experience. Script overall was very helpful and a good level of detail. Lots of very interesting and helpful information, child-focused emphasis on parent self-care. Excellent text, so needed. I wish I could have read this information 9 years ago when my son Whittier was born. We, we discussed a lot um of this in our group as, as well and um. And we're thinking about how important it is to um comment that early on in the script that um having help, even though uh it's, it's great that it's developed, but it can trigger emotions that it wasn't available when, um, when their child was born. It's concise and gives specific help for coping in cases of trouble and really positively states it nice and quite complete. Gives a lot of recognition and validation of what parents go through. That's great feedback and uh we'd love to hear uh more from anyone who wanted to add to, um, these, these comments that might not have been mentioned, um, before. OK. Um, but we'll, we'll carry on. You can, you can say at the end as, as well. So what, uh, you might want to add or take out, um, No, nothing, uh, definitely needs images. Yes, that's something we talked about as well. So, um, the, there are different stages in this, this process. First, we, as Ella explained, we went through the literature, uh, put, uh, first draft together, then, um, It has been going through a sort of editing stages, and once we've got the text more, more ready, then we'll be able to think about how it would be best presented, what images there might be in a leaflet version or in a video, video version. Um, Yes, um, so impacts, um, on, on breathing, um, really important in a complex condition. It's, um, there, there can be, one of the things that came up in our group was that there's lots of diversity in terms of the complications and difficulties. So, so we might add something on, on that, um, that everyone's journey through the feeding will be, will be quite, uh, different. Um, more about PTSD, um, yes, that's, that's, um, important. That would be a good as a, a separate film altogether, I think, uh, PTSD related to, uh, SARDS, um, the early, early days in the hospital, uh, admission and so on, really important. And that's something we can take forward for the next, um, next leaflet, uh, development. Um. And if I may interrupt, that, um, I, I do think that we scheduled one of the future webinars about trauma. We didn't already put a set a date for that, but it is a question that has been asked before to us. So I, I do think it's really useful to consider this, um, perhaps, um, also. Uh, linked to, to a next video, but I'm not sure who is going to carry that further, but I think it's a good idea and it's good also for the participants of this group to know that the Quality of Life Working group is considering a webinar about PTSD in the in the near future, I think next year. Really important. Um, specific links, I think that's, uh, important as well because it will be a very summarized version of, um, what can help and what the issues might be, and therefore, uh, signposting for further help will be really important. Um, and perspective of a patient, um, that's really important, and this, this webinar is part of it, and we'll be doing more of that in the later stages as well to make sure that it's, it's really co-produced with a patient community. Uh, what images might be helpful, um, yeah, it's off, um, um, yes, positive examples, really important. Um, and the video, you didn't see it, and that's right. Um, we haven't done that yet, so this is, these are the, um, sort of steps during this process. The final outcome will be the, the video, but we haven't got that yet. Um, anything that clarifies the verbal messages, yep. Um, Hm, um, images of food getting stuck to help to visualize, um, that might be tricky depending on the, on the format. We'll choose whether it's whiteboard, film, or something like that. Um, but we'll, we'll, we'll look into all those, uh, options and, uh, breaking up the text is really important because there's lots of information. Thank you so much. Um, how helpful, uh, would, would this group be for, for parents? Um, very helpful. There's somebody has said, um, unhelpful. We'd love to hear, um, uh, um, more about this if, if anyone wanted to, to, um, comment on, on that. On any of the, uh, any of the points. If anyone is able to comment, we'd love to hear. Um, if there's any feedback that you would like to give to us personally, um, you can also contact either myself or, or Roma. Um, it would be, it would be great to, to hear, hear more from you. And for healthcare professionals, um, yes, I think this, this was discussed in our, um, group as well, that it's really important for not just healthcare professionals, but also schools and nurseries to understand what the parents might be going through. Any other feedback, um. Good luck. Um, important to recognize parents' emotional well-being. Be kind to yourself is so important. I think that's, that's one of the key messages we wanted to get through, um, with this. So thank you so much. Um. Brilliant. Could be longer, more detailed. Um, yes, those, those are the, thank you very much. Um, that's the balance to be found to have enough information, but, but not too, too long. So we'll be, we'll be looking, looking about all the options in that as well. Um. Uh, this webinar. Oh, thank you very much. That's, uh, that's lovely to hear. Excellent, helpful, general, informative, um, support, reassuring and informative. So, that's, that's great. Thank you. So, um, if any of you would like to, um, Uh, keep, uh, fill in the, uh, Mimeter. This code stays, um, open for a couple of days. So, uh, please do, um, uh, go in and, um, add, add comments there if you, um, if you're able. But thank you very much. Now I will stop, um, stop sharing. And now we'll, we'll open the, the floor if, if anyone would like to give us any. Um, any other comments or, or experiences from the small groups on this, this webinar, we'd love to hear from you. Yes, and also the floor is open for questions about the first, uh, part where, uh, Doctor Wallace told us about both, uh, qualitative and quantitative, uh, research on mental health in, uh, in parents of this patient group. So if there's any questions from the audience, we're happy to, uh, hear and answer them. Will this, uh, will this video be shared with, uh, groups that are part of this? I, I belong to various Facebook groups on EA Talk, and uh they would benefit from this, definitely. That's, that's great. Thank you for your, um, question, Brad. Um, yes, the video will be available on ERNA, um, websites and also, um, um, I, I think it will be, um, readily available through the patient groups as well and uh also If there's a, um, leaflet version as that might be easier to access for, for some. So, we will really think about the dissemination and accessibility of, of these, um, materials, so, to, to make sure that um it can be accessed um easily. Yes, so an additional question in, in my, uh, group was, uh, whether the part of the discussion would have been recorded. I don't think it will be, uh, recorded, so that won't be part of this discussion, um, of this total video, but the presentation, both and the last part with the menttimeter presentation will be part of the recording and will be put on both Facebook, uh sorry, uh. YouTube and on um the Ernica website with a link where you can also find information about the next webinars. I saw a hand of somebody appearing and then disappearing again, um. Yes, I think it was me, Carolina, joining from Belgium. I am a mother of a son, 9 year old, and it's me that I'm so impressed and I was asking about the timeline. Because very recently in Belgium, we also made a short video of our association for the schools, 2 minutes. It's still not released, it will be, we are still finalizing it, but it's also to show the patients and the teachers what is esophageal atresia and in a simple words. So we did it with some doctors and some patients. But we didn't touch this issue of mental problems, feeding. It's, it's so needed. It's really needed and Indeed, we know that each case is different and um I didn't have this information when my child was born and I asked my excellent doctors why they didn't do it. Instead they they said that they didn't want to scare me because they said maybe my son will follow the the the, you know, good pathway without problems, but I think we all should be aware about it. Um, as parents and families, thank you very much for this, uh, contribution, but I think it's a really nice question. What the timeline is, Fuko, could you tell us something about that? Um, so now, um, we will be, uh, editing this text and then asking more feedback from, uh, different, um, patient groups for EA, um, and we are hoping to have the. Text, uh, uh, fully finalized in the next 6 months or so. Um, and then it will be up to, um, Ernica, who will be helping with the production of the video to, um, how long the, the timeline is. But, um, but yes, uh, the text will be finalized by, by the summer. Well thank you very much, and our last question will be for Kate Tyler who put up her hand. I just wanted to say that I'm very interested in the, the psychological flexibility and the need to stay in the present and be kind to yourself because I think, yes, that's incredibly important when it comes to feeding infants born with um OA. But at the same time that that surely could be part of the training in inverted commas that's given to parents right from the beginning when they know they have a child with this complex anomaly, not to wait until, I mean it's fantastic that it's in the video. And I'm not criticizing that at all, please don't think I am. But if those tools were there much earlier on, when they get to the point of starting to wean or they get into an episode of choking food getting stuck, they, they will have been kind of, um, almost self, not self taught but supported to make those, you know, because suddenly if you've got a, if you, it's hard enough when it's your own, your only child, but say it's a mother with 2 or 3 other children. Um, and, and a lot of other pressures on, and then, yes, a video is fantastic, but then to start learning how to take deep breaths, how to calm, how to be in the moment, how to put your stress on the shelf, when you've got other kids screaming, when you've got homework to do, the, the food, you, you, you know, you know what I'm trying to say. So wouldn't it be fantastic if something like this was available much earlier in the journey than when it comes to, I'm seeing you nodding Goo, so I'm hoping that you will understand what I'm trying to say. Thank you very much, Kate. I, I think I've worked as a, I've worked as a nurse and seen parents in such distressed states where actually if those tools have been in place earlier. You, you are absolutely right. I think, um, it is very difficult to learn new skills when everything is stressful, um, so, um. This is the first of these, these videos, but I think that sort of uh basic psychological skills video would be really helpful for any, any parent, um, going through stressful experiences like their child's, uh, physical, physical illness, including those kind of self-care tools that they could practice when things are not, um, so, so difficult. So that then it's easier to take them to use when, when things are more stressful. Um, there, there's a lot more that could be done in terms of preventative, uh, mental health, um, and, um, and yes, I'd like to see the psychological interventions moving more towards that, that direction. And that's a really good idea to Um, to perhaps in the future to do one of those more general, general, um, films that would fit, fit anyone, anyone, and at Ernica would be a, a very good place for that. Thank you. Well, thank you very much. Thank you everybody for attending.