Transcript

Kate Steinbeck [00:00:04] Hello everyone, and welcome to September's WH&Y webinar. I'm Kate Steinbeck and it is my pleasure to be the host for today. Before I introduce our speaker, I will just do a number of housekeeping items. So welcome to the WH&Y webinars. I should acknowledge the funding support that has allowed us to do that through NHMRC and our partners in research in a number of universities across Australia. Before we start I also wish to acknowledge the traditional owners of the country throughout Australia. I know that many of you will be on different lands and recognise their continuing connection to land, waters and culture. And we pay our respects to the elders past, present and emerging. I will just remind you that on the website, WH&Y's website, that is the link for you, and this is where this presentation will be posted so that you can review it at your leisure. And we have a large community of practice of researchers, clinicians, policymakers, and perhaps most importantly, our young people who come together to share ideas and exchange information and hopefully also find some new collaborators as well. 

Kate Steinbeck [00:01:49] Before we actually ask our speaker to start, I'll just let you know that your microphone is muted and video is switched off during the presentation. If you have something you want to say, and more importantly, if you want to ask a question, you can see in the top left panel there's a chat and you can pop in comments and you can pop in questions which generally answer the questions at the end, as most speakers find it easier to do that. You can also type your comment into the field at the bottom, which is 'type your message'. If you just want to say something, and I encourage everyone to add their hellos, at this stage. And so now we can move on to our presentation. And it's my pleasure to welcome Dr. Neda Karimi. Neda is a Research Fellow at the ANU Institute for Communication in Health Care and an adjunct lecturer at the University of New South Wales. And her research focuses on communication between health care providers and consumers. And particularly, that's why we've asked her to come and talk to us today, communication with adolescents and young adults with chronic conditions. And Neda has a particular focus on inflammatory bowel disease, a common chronic condition that is increasing in prevalence in our young people. And so, Neda, thank you for coming today and I will put up your first slide and disappear from the stage for a little while. 

Dr Neda Karimi [00:03:50] Thank you very much for that introduction, Kate. Good afternoon, everyone. Thanks for being here. I, too, would like to acknowledge the traditional custodians of the land on which we all gather today. For me, it's the Dharug Nation and pay my respects to their elders past and present. I extend that respect to the Aboriginal and Torres Strait Islander people here today. 

Dr Neda Karimi [00:04:18] So in this presentation, I'll be giving you an overview of my research involving the development and assessment of a checklist to assess readiness for independent clinical communication in adolescents and young adults. But before going any further, I'd like to acknowledge that this has been a team work effort. My collaborators in this project, Associate Professor Susan Connor, Head of IBD [Inflammation Bowel Disease] service at Liverpool Hospital, my former manager at the Ingham Institute for Medical Research, Dr. Astrid Williams, a gastroenterologist at Liverpool Hospital, IBD Service. Astrid developed and implemented an IBD specific transition pathway for adolescents and young adults transitioning from paediatric to adult care. This study is a substudy to Astrid's project. Associate Professor Annabelle Lukin, Associate Professor of Linguistics at Macquarie University. And this checklist that I'll be telling you about, it was Annabelle's idea in the first place. Annabelle's pedagogical lens has been critical to the formation of this study. And last but not least, Associate Professor Alison Moore, Associate Professor of Linguistics at the University of Wollongong. Alison is a health semiotics expert, in her own words. She has published widely on health communication research across different contexts and different modes of communication. And her theoretical model of the contextual structure of clinical consultation has been a critical aspect of this project. 

Dr Neda Karimi [00:06:35] So here is an overview of my presentation today. First, I'll be talking about the importance of this topic, the importance of research on communication and the communication needs of adolescents and young adults with chronic conditions during transition from paediatric to adult care. Next, I'll be telling you about the story of this project and a little bit on the background of this project. I will then use a couple of slides to describe what inflammatory bowel disease is, as it's been used as a case study for the development of this checklist. Then I'll go on to describe the processes of development and assessment of this checklist, the communication readiness checklist, and then I'll talk a little bit on what we plan to do next. 

Dr Neda Karimi [00:07:41] So first, why is research on communication during transition as an important topic of research? Why researching adolescent clinical communication during transition? So we all know that adolescents with long term chronic condition are expected to transition to self-management at some point during the adolescent years. As part of this transition are expected to encourage actually to see the clinician independently and alone. Parents and caregivers are advised to support and respect that, to talk to, to actually help with that aspect of transition. What could be problematic is that there is slight variation amongst young people in terms of how they communicate and form interpersonal relationships with their health care providers. And that's because the social and communication skills are still under development during the adolescent adolescent years. We know from the literature that effective communication with health care providers is an area of unmet needs amongst young patients, and that could be partly a clinician factor, but also could be partly because the process of transitioning to becoming an independent patient demands new communication and interaction styles that require learning. And this learning is currently invisible in the healthcare system. 

Dr Neda Karimi [00:09:38] So I borrowed this table from, most parts of this table from Christie and Viner, 2005. It's a table that summarises the development during the adolescent years, different stages of adolescence in terms of biological, psychological and social aspects of development. I've adding a fifth column to this table, the communication column, to summarise what the literature suggests in terms of communicative behaviour development at different stages of adolescence. So these different aspects are certainly interrelated, as also suggested by Christie and Viner. For example, that the psychological and social aspect of development is definitely interrelated with the communicative aspect of the development. Andso this age, sort of, related variation is a good guide for clinicians as well as parents and caregivers to help them identify the needs of young patients, but also know about their capabilities. Having said that, it's important to know that adolescents and young people, they learn how to communicate with a health care provider in the context of their relationships with them, their parents, as well as even their peers so variations based on their social network and based on the context of culture in which they live and communicate is normal and expected. 

Dr Neda Karimi [00:11:45] So looking closer at the last column, the communication column, and looking at the bar charts on the left hand side of the slide, a study in nephrology found that the contribution of parents to clinical talk and caregivers to clinical talk decreased significantly in mid adolescents compared to adolescents. The increase in the adolescents contribution to talk only increased in late adolescence. It didn't increase until late adolescence, which is a bit concerning because it creates a risk, particularly for adolescents in middle of adolescence. Because they are not capable to communicate in the way that they need to to communicate effectively to be able to receive the optimum care they should be receiving. So age is a factor. 

Dr Neda Karimi [00:13:06] But looking at the right hand, that pie chart on the right hand side of this slide is studying IBD. Based on studying IBD, we can see that even in late adolescence, when adolescents are 18 and over and adolescents and young adults are 18 and over, during the years that they are 18 to 25 years of age. While they could answer most of them, they could answer questions asked from them. A bit over 50% of them hit the main talk or asked questions and only 20% of them prepared questions. So while age is a useful indication. It's not definitely not enough. 

Dr Neda Karimi [00:14:09] Looking at the literature. Comprehensive communication system assessment or monitoring tools are also very limiting. There are validated tools to assess readiness for communication during transition. But they're very limited. These are usually in transition readiness assessments and assessment tools that are available in the literature, such as the 'Ready, Steady, Go' questionnaire or 'Transition Readiness Assessment' questionnaire with a couple of questions on the communication aspects of the transition. That's mainly limited to ability to ask questions and answer questions. And it does not go any further than that. So as you can see, it's limited. So there's no exhaustive sort of tool to outline what it is that is necessary for independent communication with health care providers that could be used both, to monitor and assess the readiness of young patients to transition to independence in terms of independence of communicating with their doctor. So for them to know what is it that they need to learn and what is it that they need to master? 

Dr Neda Karimi [00:15:48] This creates a risk in terms of safety and quality of care, because if they cannot identify their needs and their needs cannot be assessed in terms of how to communicate with their doctors, so you cannot address it. And then they cannot be able to communicate effectively with their health care provider. And this is particularly important because we know from the literature that young patients with better communication skills are likely to receive more attention from their health care providers. So we hope that this checklist that we are currently developing and validating could address some of those problems. But let's have a look at the history of this project first. 

Dr Neda Karimi [00:16:43] So in 2019, we started this project that looks at doctor-patient alignment in IBD, because it's a problematic area, and how that is associated with certain linguistic and communicative choices that doctors and patients make in conversations with each other. So as part of that project, a subset of participants in that project were aged 18 to 25. So keep that in mind. Then in 2020 Dr. Astrid Williams started this pilot study of the formal IBD transition pathway. And I suggested that we record consultations during the transition. The consultations within the transition clinic to look at the communication behaviour of adolescents and young adults and study transition from that perspective as well. So basically this study was a sub-study to Astrid's study. So we used data from the first project as well as from Astrid's project to look at variations between young patients in terms of how they communicated with their doctors, with their gastroenterologists, and then using that, that the results of that variation analysis coupled with a scoping literature review to see what's available in the literature on the clinical communication needs of young patients with a chronic condition. 

Dr Neda Karimi [00:18:48] We came up with this checklist of communicative behaviours that we think are important to be able to communicate effectively and independently and manage the communication side of kids. So we developed that checklist, we are currently testing its content validity. And once that's done, we will start the pilot testing the questionnaire to further test its validity and its power in differentiating between the different groups of adolescents later in 2024. And with the aim to finally implement this in practice, hopefully. So I'll I'll be talking more about the development and validation process of the checklist. 

Dr Neda Karimi [00:20:00] Before moving on to that part of the talk, I thought to use a couple of slots to talk about what inflammatory bowel disease is, because it's a really good case study, I think, for this project. Well, inflammatory bowel disease is an umbrella term to refer to two main chronic conditions, ulcerative colitis and Crohn's disease. Ulcerative colitis and Crohn's disease are characterised by chronic inflammation of the gastrointestinal tract. IBD it is not just a gut disease, is it? It affects almost all parts of the patient's life. Its main symptoms include diarrhoea, blood in stool, abdominal pain, cramping, unintended weight loss, joint pain, urgency and sometimes incontinence. It affects, liver, skin, eyes, joints and mental health. It results in loss of work, disability. It increases the risk of depression and anxiety. About 23 to 45% of people with ulcerative colitis and over 70% of people with Crohn's disease will eventually need surgery. 

Dr Neda Karimi [00:21:39] The disease cannot be cured. Ulcerative colitis can only be killed by removing the colon and the rectum and creating an internal pouch or removing the colon, rectum and anus and creating an external pack. The incidence and prevalence of IBD is increasing internationally and Australia has one of the highest rates. Young people, including children and adolescents with IBD, constitutes a large proportion of the patients. They experience extensive intestinal involvement, rapid early progression of the disease and are more likely to develop to develop complications. 

Dr Neda Karimi [00:22:32] Given the quality of life impact of the disease and its increasing prevalence amongst young population, it makes a really good case study for a study to look at how the young people communicate with their doctors about the management of their disease and how their life is affected by the disease and its treatment. 

Dr Neda Karimi [00:23:12] So going back to the study, the development of the checklist, as I said, we use data from two existing projects to look at variations amongst adolescents and young adults in terms of how they communicated with their doctors, and that was with the aim to identify any communicative needs they might have. It was a sort of a range finder, really. So we a used Moore's [2004] contextual model of the structure of consultation. To first analyse the consultations, everything we had in terms of their structure. And then we went on to look at the contribution of the patients to each phase of the consultation to to sort of create an exhaustive list of behaviours. 

Dr Neda Karimi [00:24:24] So Moore's model, she models the structure of consultation using a set of contextual phases that are recognised by clusters of meanings, if you like. These phases include parents who went into consultation. The calibration of knowledge between the doctor and the patient takes place and they set the context for decision making. Generally, patients talking about their symptoms, concerns, issues and the doctor giving them results and giving them information about their disease and the treatment plan and what not options. And really, so the next phase is the pathways, which is where the patient and the doctor talk about the options that they have in terms of treatment options proposing, describing, evaluating the treatment options available to the patient in the context of their values, as well as addressing fears and uncertainties. And the next phase, amplification, is an optional phase. During this phase, basically, the doctor amplifies the patient's voice and creating an opportunity for them to explore their reactions to the options that they have. And in the fourth phase, the declaration phase, is where the clinician provides explicit recommendations, so they declare their recommendation. The fifth phase is the patient articulates the decision in the context of previous phases, and then the last phase is the enactment or the implementation of the decision decisions made. So it's possible that not all these phases occur within a consultation, but they can and are likely to provide the context for shared decision making. 

Dr Neda Karimi [00:26:57] In terms of sequence. Well, generally, a linear sequence, but a back and forth movement between the phases is also very common. With also some functions being dispersed within the top here. So we use this model to analyse the structure of consultations. And then within each phase we looked at the adolescent's contribution to talk. We looked at patterns of turn taking, who asked questions, who answered within each phase of the consultation, who raised topics within each phase of the consultations and the contribution of the adolescent to each phase of the consultation in comparison to the contribution of the clinician as well as the caregiver or any other person who is present in the consultation. 

Dr Neda Karimi [00:28:02] So we looked at this, but we also looked at variations amongst clinicians and how different they were, like the differences between clinicians in terms of how they talk to their adolescent patients. But that's really beyond the scope of this particular project. The results of that variation analysis is now published in a journal article at the International Journal of Adolescent Medicine and Health. Anyone who's interested can access the paper for free to email me and I'll send you a copy privately. 

Dr Neda Karimi [00:28:48] So to the results of the evaluation analysis. Within the bearings phase... So first of all, I can say that we we found considerable variation between adolescents. And these are not adolescents, late adolescence or early adulthood, really, for age 18 to 25. And we found considerable variations amongst them in terms of the bearings. There were variations in terms of whether and how they provided details of current medication, for example. 

Dr Neda Karimi [00:29:32] Second row shows that it's the mother who provides details of current medication despite the adolescent being the addressee in this conversation. In the second example, the example next to it, it's the adolescent who takes control of the conversation. 

Dr Neda Karimi [00:29:56] Variations in terms of raising, reiterating issues of concern and variations, in terms of asking questions about treatment experience and variation, variations in terms of providing details of recent investigations and seeking results, clarifying treatment plans, providing details of other medical appointments. So these variations were due to either a lack of ability or opportunity to provide such details, but also could be because they were not relevant to that patient. But as I said, it's a good range finder for a tool like this that needs to include everything really, pedagogical tool like this, that needs to include everything samples out there for anyone who's interested, looking at variations within other phases of the consultations pathways. 

Dr Neda Karimi [00:31:09] Again, there were variations in terms of whether and how the adolescent sought recommendation regarding an option, expressed concerns or preferences in response to proposed options or recommendations and sought alternative options. Whether and how sought information on the recommended treatment, whether and how they clarified the tasks that they needed to undertake to in order to implement the decisions made. 

Dr Neda Karimi [00:31:53] So we coupled that with the scoping literature review with the aim to really identify what the communication needs of adolescents and young adults with chronic conditions are. We were quite broad in our approach to conducting this scoping literature review because we want it to capture as much as they could in terms of the needs of adolescents, in terms of communicating with the doctors during the transition years. We were broad in terms of the review questions, in terms of the inclusion criteria, studies that provided insights into clinical communication needs of young people with a chronic condition regardless of their design and also regardless of whether that meet was identified in their results section or in their conclusions section. 

Dr Neda Karimi [00:32:58] So very broad in terms of the inclusion criteria as well as the keywords we use to do that scoping literature, search databases. We use Scopus , PubMed  and Cochrane. We identified 20 relevant articles that gave us some some indication of communication needs in adolescents with a chronic condition during transition from paediatric to adult care. 

Dr Neda Karimi [00:33:38] These are the included articles. They were mostly qualitative studies that looked at perspectives or perceptions of adolescents, parents and caregivers or clinicians, but also some quantitative observational studies and a Delphi Study as well. So we used the same framework we used for the main study, the variation analysis study. To summarise the findings of this systematic scoping literature review we used the Morris model. But we added additional constructs or themes, general constructs or themes, and when those findings applied, did not apply to a specific size, but more so generally. 

Dr Neda Karimi [00:34:47] So in in terms of bearings. So there were, there were overlap between the findings of the first study and this scoping literature review. But the additional additional points that we found through this scoping literature review were in terms of bearings. Two things that adolescents seem to need support with is. These are expressing feelings and thoughts and asking relevant questions about sex, pregnancy, alcohol and love without the fear of being judged by the clinician in terms of enunciation or articulating the decisions, their decision about the treatment option. They need to learn how to share decisional burden if they need support and reassurance. Terms of enactment of the decision and need to know how to order refills and do tests was identified as a need in the literature. 

Dr Neda Karimi [00:36:00] And then three general points or three general constructs. Question and answer, management of the triadic communication and adaptability. In terms of question and answer, the need to set the agenda and prioritise questions and concerns. The need to ask questions answered questions obviously, and request clarifications and explanations. In terms of managing the triadic communication, what they need to be able to manage that triadic dynamic as as well as correct the care apparent if they provide wrong information. And on their general adaptability, the need to be able to orient to new patterns of different provider was also something that the literature suggests as something that needs to be addressed. 

Dr Neda Karimi [00:37:05] So as you can see, these are really, this is an exhaustive list, including the previous findings. This is an exhaustive list of behaviours that goes well beyond ability to answer or ask a question or ability to ask for clarification, and it's more concrete and tangible as a pedagogical tool, really. Easier to be used as a pedagogical tool, as a monitoring tool. 

Dr Neda Karimi [00:37:50] So as a result of these two stages, a checklist of 35 items, including nine constructs, was developed. We are currently assessing the content validity of the checklist using feedback from an expert group, including adult and paediatric gastroenterologist, paediatricians, auditing nurses, a gastro psychologist, and of course, adolescents living with IBD and their parents. The psychometrician and an adolescent health expert. So members of the expert group will be asked to review each item's representativeness and importance in measuring the overarching construct. Rate each item's clarity, suggest any additional items not including the checklist, as well as provide suggestions in finding a name of the checklist. 

Dr Neda Karimi [00:38:56] So we're finally in the middle of the content validation phase. Once the content validation phase is completed. The Checklist is will be revised accordingly. And then test the full pilot test for further validity testing with 100 adolescents living with IBD and to be tested for further validation, as well as for its power to differentiate between different groups of adolescents now. This will be done qualitatively as well as quantitatively. Qualitatively, using recordings of consultations and interviews with adolescents and quantitatively by looking at correlations between the scores on the checklist as well as scores on the IBD Self-efficacy Scale for Adolescents and Young Adults (IBDSES-A). 

Dr Neda Karimi [00:40:10] So once the checklist is is fully tested, it will be implemented in practice using an IBD specific electronic medical record system that is currently in place at 21 adult and paediatric hospitals across Australia and New Zealand. As a pedagogical tool for us to help adolescents learn about what is it that they required to master, but also in future as as a pedagogical tool to inform the development of future interventions to address the communication needs of adolescent, But also as a clinical and diagnostic tool for clinicians and parents to identify areas of needs and address that appropriately to adjust and adapt their communications to and provide support to the adolescent. 

Dr Neda Karimi [00:41:29] That was the end of my talk. Thank you very much for baring with me. And I'm ready for your questions. 

Kate Steinbeck [00:41:36] Thank you, Neda, for a very interesting talk and indeed, a lot of work ahead of you, I think. Very interesting to hear about the careful planning and involving, I guess, some very specialist advice from people, perhaps that clinicians don't immediately think of looking at the sort of power of language. We do have a number of questions, and I'm going to start with two from Professor Pip Colin. Her first one was 'How has your study taken into consideration diversity of language and culture, and ethnicity?' 

Dr Neda Karimi [00:42:26] Okay. So that's a good question. The sample that we're dealing with, the sample that we used for this study included those patients. So, basically, IBD patients, they are the IBD patients at Liverpool Hospital where we collected the starter. There are not many CALDpatients that are young at our service. And in the literature I didn't come across anything really that suggests any specific needs for the CALD community. This is this was in the back of my mind as far as I was doing this scoping literature review. I haven't come across anything in relation to specific needs of people from diverse cultural or linguistic backgrounds, unfortunately. But I guess how we would be able to address that is to really during the study, as well as my aim to potentially include people from other linguistic and cultural backgrounds in the content validation phase, I guess. So that's something to consider really. 

Kate Steinbeck [00:44:08] I might just  follow on from that. Is there, with the distribution of IBD in the population, does it have higher prevalence in particular ethnic groups? 

Dr Neda Karimi [00:44:20] It is. Yes, it is. Basically, it used to be called the 'Western' sort of disease because it started from this area like the Western countries. But it is getting more, more and more prevalent in other parts of the world. So that to answer your question, but this young generation of patients like that, they are coming from a different cultural background. We've got patients coming from a different cultural background, like people of migrant parents, young people with migrant parents. But in linguistically there's no like we didn't really witness any variations, to be honest. Um, but what we've got in the content validation phase, we've got adolescents and parents from other cultural backgrounds involving in the study. 

Kate Steinbeck [00:45:21] Thank you. We might go on to the second question from Pip Colin. And it's an interesting question: 'Can the checklist, and I know that this is still in development, have you thought about how the checklist could be flipped so that you inform professional development? That is, the people who are answering the questions, the professional carers? Do you think you can see a role for that? 

Dr Neda Karimi [00:45:58] Yes, certainly. I think certainly, knowing what those individual communicative behaviours are and being conscious of those individual communicative behaviours would allow them to think about them and help us to approach them. Whether that could be that could inform some sort of an intervention for clinicians, we haven't. To be honest, we haven't thought about it. But there's certainly some opportunity in that, I think. 

Kate Steinbeck [00:46:40] It's always good when you have these webinars questions come up that would make you think about other aspects of your research. The next question, I'm just going back there was a question from somebody: 'Has the review you mentioned on communication in young people been published?'

Dr Neda Karimi [00:47:03] Now it's in the process. We're currently drafting the manuscript with the aim to get it ready for publication before the end of the year, hopefully. 

Kate Steinbeck [00:47:20] Okay. So it would be good if you could let us know where is the publication, because I think many people will find that interesting. And the next question is, and this is this is sort of a little relevant, 'Do you have any data on communication comparing face to face with online consultations?' Let's see, with obviously doing this perhaps in the middle of the pandemic or the post COVID period. 

Dr Neda Karimi [00:47:57] That's right. Yes, we do, actually. There are some differences, but not like marked differences. Because our sample was quite small, we couldn't make any specific conclusions. But yes, we we've got telephone consultations as well as face to face consultations recorded for this project there. As I said, there are certain differences between the two modality. But we couldn't really make that conclusion based on such a small sample of recorded consultations, to be honest. 

Kate Steinbeck [00:48:47] Let me just find my questions again. Then the other thing it was very interesting with your studies that parents were involved and  they there was a lot of information on  how parents communicated. I'm wondering, since we're talking about transition, are you looking at young people's communication with and without parents in the room? Because as a long standing adolescent physician communication skills are very different. Sometimes when the parent is out of the room and in fact, of a higher standard than you might think when the parent is there. 

Dr Neda Karimi [00:49:42] Look, I agree with you, Kate, and that's why we sort of the study that we did was a range finder. Yes, we've got consultations where the parent is present and consultations where the parent is absent. And we I can tell you that they're very different. So I guess.. And that's why we sort of we didn't mark it as ability only that if you look at that, those result tables, it's 'opportunity', 'ability' or 'poor ability' to provide such information, really. So when the parent is present, generally the patient's opportunity to provide such information is sort of minimal most of the time. And also some of them might not be relevant to a particular consultation or a particular patient. But as a range finder, it serves its purpose, I think. But yes, I agree with you. 

Kate Steinbeck [00:50:51] Because I think that it becomes very important when preparing for transition and and teaching young people the skills to actually communicate is, what I think you referred to as invisible learning, how we talk to health professionals as patients. Well, I'm just seeing, if there are any more questions. So I've got another one here from James: 'What consideration should be given to analysing the role of communications support persons including, but not limited to parents, particularly a person explicitly chosen by the young person?' 

Kate Steinbeck [00:51:51] I'll read it for you again. That's quite an interesting one. 'What consideration shoukld be given to analysing the role in communication of support persons, including, but not limited to parents, particularly a person explicitly chosen by the young person.?' Not always do we see our patients with parents. Generally it's parents, but it's always wise to clarify who the person is with them in the room. Sometimes it's an older sibling, sometimes it's another relative. And that, of course, may depend on whether it was simply because a parent not available or because the young person chose that particular accompanying person. So I guess that's a pretty open question from James. And just wondering if you have any feelings about that. 

Dr Neda Karimi [00:52:46] I'm trying to understand the question, really. Is it is it analysing their role in terms of role relationship with the patient or contribution to talk?

Kate Steinbeck [00:53:02] If James would like to type in some clarification, that would be brilliant. I'm thinking that perhaps it's more about if a young person explicitly says they would like a certain person to accompany them. 

Dr Neda Karimi [00:53:25] That's what I sort of suspected. 

Kate Steinbeck [00:53:28] Does that help them? Do they bring them there for a particular reason? 

Dr Neda Karimi [00:53:34] Yes. So this is particularly relevant to one of the points we found in the literature, being able to share the decisional burden with the caregiver if they needed to. I think that's relevant to that, and that's part of their ability. So that that in itself is still the communicative skill to learn, to be able to share that decisional burden without losing their agency or even to communicate with the doctor or at least that's my understanding. I think this was one of the points we found in the literature that is also included in the checknloist. And so it's an item on the checklist already. I'm not really sure if I have answered that question. 

Kate Steinbeck [00:54:40] So I've just met that is the question so we can record it. He's interested in idea of different approaches that unpack the traditional relationship and setting of patient to professional. 

Dr Neda Karimi [00:55:00] Hmm. In terms of the different approach, he said, unpack the traditional relationships. Um, yeah, sort of re-engineering that patient-professional.

Kate Steinbeck [00:55:21] I think in terms of communication and I suspect this might be something that when you've done 100 young people, it might be easy to answer. But I think it's a good point raised that, it's young people may answer and communicate very differently depending on who's in the room. And it will have, I guess, an impact on how you perceive their skills of communication. And perhaps it's something that you can consider if a young person does come with another accompanying person who is not necessarily their parent. 

Dr Neda Karimi [00:56:14] No, that's a good point. 

Kate Steinbeck [00:56:15] And if you have a hundred, it may well be something you have the opportunity to look at, although I suspect it will be a relatively small number, but it will be useful exploring communication styles when there are different persons in the room. Sometimes young people bring one of their peers as well, and that can sometimes be very positive, but can also be very distracting sometimes. 

Dr Neda Karimi [00:56:50] Very interesting thing to look at. 

Kate Steinbeck [00:56:54] I think as you sort of alluded to, there's the whole issue then of confidentiality and consent and and working out the sort of capacity of that young person to deal with a conversation without parent support or input. 

Kate Steinbeck [00:57:29] Everyone can probably just read the next two comments and Neda. I think we're going to have to wind up in in a minute or so. So before we even look at these, I'm going to thank you very much for actually presenting. 

Dr Neda Karimi [00:57:43] Thank you for the opportunity. 

Kate Steinbeck [00:57:43] We'd love to hear from you when you have the pilot completed, that's obviously going to be a very fascinating study. 

Dr Neda Karimi [00:57:51] Thank you very much. 

Kate Steinbeck [00:57:53] And I think that we've got a question or comment from a wellbeing nurse in schools, presume Natasha is from New South Wales and who sees her role as an important role in preparing young people to be self advocates and sometimes she makes the comment that when she's there as a support person that they're more confident to communicate. And that's an interesting thought having a non-parent, the professional in the room. And the other is... I have to read it, I should say... She's from Shoalhaven. So lovely to hear someone from Shoalhaven there. And there's another comment that I think we will finish with from Susan saying that 'I think it's better to consider the wider frame of quality of care for adolescents. As many subspecialist clinics don't think they have a wider role and that is sort of identifying the things that you very rightly talked about, the mental health and all the other aspects that go on in adolescent development. Peers, sexual and reproductive health, risk behaviours. And I'm hoping that we can, perhaps, you know, we can invite you to record some of those as well. Oh, yes. I think we're going to have to finish. Again, thank you.