Professor Frank Oberklaid, AM, is an internationally recognised researcher, author, lecturer and consultant, and has written two books and over 200 scientific publications on various aspects of children’s health and development. He is Co-Group Leader of Child Health Policy, Equity and Translation at the Murdoch Children's Research Institute and a Professor of Paediatrics at the University of Melbourne. Frank has longstanding clinical, research and policy interests in child mental health, and currently is co-chair of the National Children’s Health and Wellbeing Strategy.
Words matter: Getting the language of child mental health right
Words matter: Getting the language of child mental health right
This webinar was the first of a two-part series exploring the importance of language in supporting children’s mental health and wellbeing.
Audio transcript (edited)
MR BOWDEN: Good afternoon or good morning depending on where you're joining us from and welcome to today's webinar, Words Matter, Getting the Language of Child Mental Health Right. My name is Mitchell Bowden and I'm the engagement and impact manager within the knowledge translation and impact team of the Australian Institute of Family Studies.
Firstly, I'd like to start by acknowledging the traditional custodians of the land on which we're meeting. Melbourne, the traditional custodians are the Wurundjeri and the Bununrong and Boonwurrung people of the Kulin Nation. We pay our respects to their Elders, past and present, to the Elders from other communities who might be participating today.
So a bit about today. Today's the first of two webinars that we're running this month. This two-part series will be exploring the role that language plays in children's mental health and wellbeing. We'll be looking at the what we say but also the how and the where we say it, the impact that this language can have on children's wellbeing. Importantly in today's webinar, we'll be exploring the importance of getting this language right.
Our presenters will be discussing different aspects of this including how parents own understanding of mental health can affect how they access support for children. Risks and benefits of applying diagnostic labels to children. How we can change the way we talk about our mental health to ensure children get the support that they need.
It is my pleasure to introduce our wonderful presenters, all eminent experts in their field. Professor Frank Oberklaid, Dr Anthea Rhodes and AIFS very own Dr Rhys Price-Robertson. So Frank is an internationally recognised researcher, author and consultant on children's health and development. Frank has longstanding clinical research and policy interests in this field and is currently the co-chair of the National Children's Health and Wellbeing Strategy. Anthea is a developmental and behavioural paediatrician at the Royal Children's Hospital in Melbourne and director of the National Child Health Poll. Anthea has a range of clinical interests including the health needs of vulnerable children and the importance of medical education. Rhys, as I mentioned before, works here at AIFS as a workforce development officer on the emerging minds project. He has also published extensively on topics such as mental health, fathering, family life, psychotherapy and social theory. So welcome to you all and I'll first handover to Frank to set the scene for today's webinar. Over to you, Frank.
PROF OBERKLAID: Thanks very much, Mitch and welcome everybody again. So this is the slide that I often use when I give talks on child mental health. It's a slide of an elephant in a room and those of us working in a child mental health space we're always wondering why is it that this is an area that traditionally has been underfunded and undervalued in terms of policy and resource allocation.
So particularly it was surprising in the context that half of all of adult mental health problems begin before the age of 14 but a recent survey suggested 14 per cent of Australian children aged between four and 17 years have a diagnosable mental health problem. Seven out of the 10 most common presentations to paediatricians around the country are for mental health. More than half of children with mental health problems don't receive professional help.
And this is in a context where there's more and more talk about prevention. That the earlier we begin, the earlier we intervene, the earlier we diagnose, the cost of intervention is low and the effectiveness is high. Over time if we miss these opportunities for early diagnosis, early intervention, the cost of intervention goes up and the efficacy goes down. So the elephant has sort of disappeared from the room because there's now more and more emphasis on children's mental health. It'll be reflected in the various inquiries that'll be reporting this year. Why have we not focused on children for all of these years? I think there are a number of reasons.
One is that children aren't their own agents. We rely on parents to bring their children to a professional for assessment and support. There's diversity across professionals who are involved with children. So it's not just psychologists and psychiatrists that you'll see later, there's a whole range of professionals who see children and have the opportunity to work with them.
It's a very fragmented service system. There are no silver bullets and governments really don't like complexity. They like simplicity. A causes B, therefore, we'll invest in A. There's uncertainty where to invest, where to focus policy. There's been difficulty we've had in instructing a coherent narrative and importantly for this seminar, as we'll hear over the next hour, there's been no agreement on terminology. So what I'd like to do now is handover to Anthea to talk about the results of her National Child Health Poll. Anthea?
DR RHODES: Thanks, Frank. Hello everyone and I'm very pleased to have the opportunity to be here today and to be talking about mental health at such a critical time when I think we are potentially looking at a tsunami of mental health challenges for children and families in the setting of what we're all experiencing and plodding through in different ways at the moment across with COVID and the pandemic, so very timely.
So I'll share with you over this short while some findings from the National Child Health Poll where we explored the concept of child mental health literacy. So what exactly is mental health literacy? So the very first step to getting help is, of course, recognising when it's needed and as we just heard from Frank, when it comes to children so often that process really sits with the parent or other advocate or agent for a child. So that's why when it comes to looking at health literacy for children we really need to understand what it is that parents know and understand about child health and in this setting child mental health.
So health literacy has a range of definitions. Our own Department of Health defines it as the concept that lies at the heart of a person being able to take control of their own healthcare but of course, in the context of a child a parent doing that for their child. For making informed health decisions. So an element of knowledge. Seeking appropriate and timely care. So applying that knowledge and then managing processes of illness and wellness.
So at the heart of this is a series of steps. You need to know some things. You need to apply that knowledge and then in doing that be able to seek help. So very important for parents and particularly in the context, of course, of the NDIS where parents are an advocate for their child in that help-seeking process.
So we were interested to understand when we apply the concept of health literacy to child mental health what do parents know, what do they understand, how confident are they in applying that knowledge and how do they go about accessing and seeking help for their children? Because we can have all the services in the world, without these steps first, any of those children will not reach those services.
As part of a much larger project called the National Child Health Poll where we serve 2,000 parents and carers across Australia every quarter. We ask a series of questions about the topical child health issue and on the screen here you can see we've covered a range of issues and very importantly we looked at child mental health about 18 months ago to see what it was that parents know and understand about this really important topic.
So as I mentioned, we have participants in this study that are from across Australia. So it's a representative sample, all states and territories represented in that sample. We have some cultural diversity that looks like our national picture as well. So we get a really nice idea of what's happening in Australian homes and in the community.
So what did we learn? Firstly, we learned that parents are not very confident when it comes to recognising mental health problems in their children. So only a third of parents said that they felt they would be able to recognise a sign or symptom that there might be some concerns with their own child's mental health. So two-thirds of parents, the vast majority, are not confident that they would know if something was amiss when it came to their child's mental health.
In terms of different groups and their levels of confidence, male parents, Dads, were less likely to be confident that they could recognise a problem in their child's mental health. Single or sole parents also less confident but importantly also across all income groups and levels of education, we saw a very similar picture which suggests that this is a very far-reaching problem.
So what about levels of knowledge? So parents weren't confident they could spot the signs. Did they even know what child mental health and wellbeing looks like in children? Did they know what the signs and symptoms of a problem might look like?
Today we're hearing all about words and how much words matter. What we did in our study was use descriptive language to describe different situations that might represent difficulty with a child's mental health or wellbeing. Examples that would perhaps reflect anxiety or depression. Problems with mood, problems with behaviour and then ask parents to tell us whether they thought these sorts of things might represent a mental health problem so that we could try and understand what their level of knowledge was like.
The majority of parents had good knowledge when it came to teenagers and in particular mood disorders. So depression, anxiety in teens was a stronger area for parents when it came to knowledge. As we went down the age groups the level of knowledge deteriorated. So one in three parents didn't know that primary school-age children can get depression. That mood disorders even exist in this age group. So the chances of a parent recognising one of those problems and then seeking help for it are incredibly low if, of course, they don't even believe that it exists.
A quarter weren't aware of the concept of internalising problems particular in primary school-age children. So where children might be withdrawn, anxious, less likely to engage, that those things may also reflect trouble with mental health. Upwardly facing or externalising symptoms where much better recognised. So if a child was aggressive, having a lot of tantrums or demonstrating things that were much more visible to parents, they were more likely to say, 'Oh yeah, that could be trouble with my child's emotional wellbeing or mental health'. But internalising problems were much less likely to be recognised.
A third of parents, concerningly to us, didn't recognise that persistent sadness or tearfulness was not normal for a child. So often the threshold, if you like, of what was acceptable or okay was actually very, very low and would sit, as professionals in this space, that we would say is concerning or might suggest a child is struggling but a concerning number of parents thought, well that's probably okay. That's just part of being a child. That's just part of being a teenager.
Perhaps one of the really most interesting and concerning areas was when it came to very young children. So one in five parents told us that they didn't recognise that a baby's brain could actually develop social or emotional problems. They thought it was too immature and this belief was twice as common among male parents, among Dads, when compared to female parents. So the idea that an infant actually is also developing social and emotional wellbeing was lacking completely for some parents when we asked them about these things.
So recognising that there might be gaps in knowledge, we also wanted to know what would make a difference. Parents told us that more time connecting with their child would help them recognise if there was a problem. They also talked about how life is busy and chaotic and these sorts of things are hard. So important for us to understand that we need to support parents to be able to do these things. They wanted more information. Learning about what the normal signs of health and wellbeing look like as well as what the signs of a problem might look like.
And then also avenues for help. So having more information from school. A contact source to help them understand how their child was going and having someone they could turn to. So a doctor, a psychologist, another professional to help guide them and understand what was happening for the child. All areas where parents said, 'This would make a difference'.
So we talked about knowing what mental health looks like and what mental health problems might look like. We talked about whether parents are confident that they can recognise those issues. What about seeking help because this is really the third key component to the concept of being health literate, being actually able to apply that information and then engage with the system in a way that's going to make a difference to the health and wellbeing of your child.
So more than half of parents told us they were not confident that they would know where to seek help if they did feel their child was having mental health problems. So even if they'd got to that point of recognition, then they were going to stumble. What to do next and where to go for help?
In this particular group again we saw some differences where single parents and male parents were less confident that they would know where to seek help. We also saw a very protective factor in the relationship with the general practitioner. So parents who told us that they had a regular GP, was caring for their child and their family, are much more likely, which makes sense, to say they were confident that they would know where they could go for help and the sources of help included that GP. They also cited psychologists as another avenue for help if they did seek it. School teachers and school counsellors. So really important for us to recognise that school teaching staff are seen by many parents as a source of help and knowledge when it comes to their child's social and emotional wellbeing and that, of course, has implications for supporting those professional groups to be able to meet that need and fill that role.
So yes, among those help-seeking behaviours, as I've just mentioned, parents who were male, single parents, may have had more difficulties in recognising where to go for help.
But then also there were challenges around recognising if they should present for help at all. So one in three parents told us, concerningly, that they believed mental health problems might be better left alone to sort themselves out over time. So they were not actually of the opinion that seeking help was going to be important or make a difference and again a similar pattern of fathers or male parents, single parents and in this case, also those of cultural diversity and speaking a language other than English at home are more likely to hold this belief, that things might sort themselves out by themselves over time. So this is an area where we still have a lot of work to do in raising awareness about the fact, the things that Frank just shared a few moments ago, that intervention early is the best way and is going to make a difference for these children and young people.
We also asked about stigma and in particular, we asked parents whether concerns about what other people might think or feel about the idea that their child had a mental health concern, whether that would affect their decision to access help. One in ten parents said that those worries about what others think would affect whether or not they would actually seek help for their child. But whilst we feel we've made a lot of progress in the space of mental health awareness and stigma it's still very much part of the picture for some parents and carers when it comes to seeking help.
So thinking about all these things together, we essentially saw a pattern where there was lower mental health literacy among some parents. In particular, male parents, single parents, those of younger children where the idea and understanding of what mental wellness and problems looks like but in some aspects of that mental health literacy also parents of culturally diverse backgrounds, in particular in our markers, they spoke a language other than English at home, they were more likely to have some challenges in recognising problems and making decisions that were going to be effective in seeking help and accessing care for their child.
Importantly, having a regular GP was a very strong positive factor and was protective when it came to mental health and wellbeing and literacy among parents. So this is an area where we can actually target and support families to build those relationships because we can see that it does make a difference to how health literate they are.
Clearly from this study, we learned that there are some big gaps when it comes to parents understanding about mental health. The difference between using descriptive language to capture those knowledge gaps and the type of language that we often use in our healthcare settings, which we'll hear more about from Rhys shortly, was really highlighted in this study.
We need to develop and work towards and what we're here to talk about today is an accessible and common narrative about mental health. Talking about mental health and wellbeing in a way that parents can understand it and doing that across the life spectrum. So from when children are very young, infants and toddlers, right through to teenage.
Our study suggests we've seen some progress in the children who are perhaps in the teenage bracket but that we've very much still got a long way to go and gaps in those earlier younger age groups. Their mental wellness let alone illness or health problems is not on the radar at all still for some parents and carers.
Where we've seen groups that are vulnerable, so in this instance, sole parents, fathers in particular and across some aspects those parents of culturally diverse backgrounds, really need more targeted research and qualitative research to better understand those gaps in health literacy around mental health so that we can develop targeted interventions to support those families, build their knowledge and their ability to access care.
And of course, all of this reminds us that we need to consider mental health literacy, the language we use and how parents can access care in our service planning and policy because as we continue to develop really important services for mental health and wellbeing unless we are also thinking from the beginning about how parents recognise problems and then take action to seek help and engage with those services we will continue to miss, perhaps, the most vulnerable of our population even with the services that are there and available.
So we know young minds matter. As Frank said, the elephant in the room, fortunately, I think, is recognised. You know, now we've come a long way certainly as healthcare professionals and those providing a lot of engagement and care to children and young people as all of you will be doing. We know that mental is something that we need to think about but we need to take it a step further and think about the words we use to describe mental health and wellbeing and what sort of impact that's having on the way parents recognise problems and seek help and care in order to keep their families well.
So I'll be very happy to answer questions later on but I think at this point I'm handing over to my colleague, Rhys who's just appeared on the screen. Hello Rhys.
DR PRICE-ROBERTSON: Hello.
DR RHODES: We'll talk a bit more now about how this language around mental health is used particularly in diagnosis and diagnostic labelling. So over to you, Rhys.
DR PRICE-ROBERTSON: Thank you, Anthea. Let's hope I can get the slides working. Well hello everyone. Since we're talking about language today I just wanted to add to Mitch's acknowledgement and acknowledge that I'm presenting from central Victoria on the land of the Djadjawurrung people and I just wanted to acknowledge that their language has been essentially lost for a hundred years now. People are working to revive it. They're working to kind of maintain their culture in that way. I think it's important for us to recognise that language and culture go together.
As you can see, I'll be talking about diagnosis in child mental health. But look in another way, I'll actually be talking about language and culture because when we think about diagnostic frameworks what they actually are, they're one of the main languages that our contemporary culture uses to understand particular forms of suffering and particular forms of impairment.
You might endorse the language of diagnosis, you might resist it but I don't think we can avoid its basic influence especially in the area of mental health. But I think since we're discussing these issues let's sit with this language of diagnosis for a little bit today and really allow it into our conversation.
A lot of what I say today comes from a CFCA paper that I published a couple of years ago. Ah, there it is. This is available on the CFCA website for anyone who's interested. It's downloadable. When I started writing this paper I had a lot of criticisms of diagnostic culture in general and I guess it was a surprise for me to find that many of these criticisms were really softening as I wrote the paper.
I think they were softening because this is such a complex topic and I found that if you look at this closely it means that you need to or I needed to let go of some of the black and white ideas that I'd been holding onto for quite a long time. So even though I might sound pretty critical in my talk today I'm really not that interested in feeding into kind of black and white or either or debates that we sometimes see in this space around diagnosis.
You can see an outline of my presentation or you could see an outline. I might just go back here. An outline of my presentation here. I want to say a few things about the DSM and how its diagnostic categories are constructed. Then I'll spend most of my time looking at what this language of diagnosis does and doesn't do. So the risks and benefits of it.
Okay. So the Diagnostic and Statistical Manual of Mental Disorders is in its fifth edition. So the DSM-5. I'm guessing many of you who are online today know something about this document or maybe you use it in your work. The other diagnostic systems that are sometimes used in Australia are such as the ICD but really the DSM is – it dominates our diagnostic understanding of both adults and children. So it's going to be my main focus today. Most of what I say also applies to the ICD anyway.
The DSM is often called the bible of psychiatry but since we're talking about language I'm going to suggest that we see it not as a bible but rather as a dictionary. We have this language of diagnosis and the DSM is our dictionary. It provides us with a set of labels and provides detailed definitions for each of these labels.
I think it's difficult to overstate the influence of the DSM. So it reaches far beyond the walls of the clinic. It shapes research. It shapes policy. It shapes our language obviously. I imagine it would be fair to say that the DSM shapes how many of us who are here today view our own suffering, understand our own suffering and the suffering of people that we know and love in our lives.
You can see a quote up here. 'Few professional documents compare to the DSM in terms of affecting the welfare of so many people.' The DSM is produced by the American Psychological Association or the APA and I think it's safe to say that its production tends to be a messy and politicised process. The disorders in the DSM are arrived at through the consensus of committees of experts. They're sometimes based on surprisingly limited empirical evidence and they tend to be more influenced by historical and practical considerations than any kind of clear rationale that runs all the way through the DSM system.
Now I used to think that points like that kind of discredited the whole DSM but I don't really think like that anymore because I think we're still so far from the point where we could actually have a thoroughly scientific or evidence-based diagnostic system that probably the consensus of experts is one of the best methods we've got at this point and I'm yet to see a complex human process that isn't messy and political. So it's not to say that things couldn't be greatly improved though and I'll talk a little bit about how I think things could be improved.
So the DSM system changed quite radically with the publication of the DSM-III in 1980. Before that time psychiatric frameworks tended to see mental health symptoms as reflections of either difficult circumstances in people's lives or as intrapsychic conflicts. So there was a strong psychoanalytic influence up until that point but then, I'll read you this quote. 'In a remarkably short time psychiatry shared one intellectual paradigm and adopted an entirely new system of classification. DSM-III emphasised categories of illness rather than blurry boundaries between normal and abnormal, dichotomies rather than dimensions and overt symptoms of underlying ideological mechanisms.'
So these last points are really important. DSM is a dichotomising document. So it's on or off and it doesn't deal very well at all in blurry boundaries or continuums and very importantly, the DSM focuses on symptoms. So it provides tables for clusters of symptoms. In other words, it's a descriptive document. It doesn't identify the causes of disorders so it's not explanatory.
I think it's good for us to recognise how different this is from other medical taxonomies which expect to be explanatory. So if we go to the doctor with a persistent cough we expect the doctor to identify the underlying cause of that cough. It might be a chest infection. It might be asthma. It might be lung cancer. Now it could even be COVID-19. You want to know what the cause is. This isn't what the DSM does. It simply gives names to clusters of symptoms.
Labelling someone with depression is the equivalent of labelling them with persistent cough disorder. So in both cases you've given a name to what's happening to them but you haven't given any information about the cause of their condition. This is just kind of important background information. As we go on and talk about the DSM it's important to know this about it. Just some very broad observations.
Now what I want to do is look at some of the strengths, strengths and weaknesses or – yes, strengths and weaknesses of the current diagnostic system such as the DSM. So the strengths. Why is it useful for us to have a dictionary like this? You can see some of the most commonly stated strengths up here and really most of these are just elaborations of the first one. Diagnostic systems provide us with this common language.
So before the DSM-III was released it was much more likely that two mental health professionals would provide different diagnoses for the same client because everyone was speaking languages or at least different dialects. One of the reasons the DSM has been so popular is that it's increased inter-rater reliability which is the measure of how often two or more people, two or more clinicians arrive at the same diagnosis given the same presenting symptoms or the same client.
So this common language that we have is obviously really important for service providers or it can be. It can be very important for research too. When you don't have this common language then large scale replicable research is virtually impossible. The publication of the DSM-III in 1980 precipitated an explosion of clinical research and most of what we call evidence-based practice in mental health today has been underpinned by the diagnostic categories in the DSM.
Having this common language is also important for things like the administration of government programs. So we could look at the NDIS as an example. It can be important in legal matters too. The authors of the DSM do caution against using it in this way but it is still widely used in the courts and in the legal system where it provides at least some degree of consistency and clarity when people are talking about mental health. So the DSM provides us with this common language but this language, as I'm sure many of you know, has been subject to pretty intense criticism over the years and especially since the publication of the DSM-5 a few years ago.
I want to spend a little bit more time on these criticisms because I think understanding them helps us get at some of the issues that are really important for us to discuss today when we're thinking about language. Some of the issues that we want to address around language.
First though, I want to acknowledge that many of the accusations that get levelled at the DSM are not necessarily all about the DSM itself. So they can also be about the ways in which the DSM gets used and misused in societies like ours. I don't think it's right to necessarily hold diagnostic systems responsible for all the ways in which people misuse or misunderstand them.
So to the criticisms. Probably the most widespread criticism of the DSM is that it pathologies normal human experience. It's led to what Allen Frances calls the medicalisation of ordinary life. So Allen Frances was the head of the DSM-IV Task Force, so he was basically in charge of producing the DSM-IV, but then he kind of went a little bit rogue, and you can probably see that from one of the covers of his books here. So the idea here is that we're making medical problems out of difficult but perfectly expectable human experiences, such as sadness or grief or shyness or disappointment or inattentiveness and so on. Now, unfortunately, this question of over medicalisation is very difficult to settle because we don't even have a clear definition as to exactly what a mental disorder is. The current boundaries between normal human experience and psychopathology aren't decided by lab tests.
You can't see these conditions in brain scans or blood samples. The boundaries of these conditions are arrived at through a mixture of professional opinion, empirical evidence, philosophical thinking, conceptual reasoning, risk-benefit analysis. And so I think disagreement over these issues, about whether we are indeed pathologising normal human experience, is going to persist for a long time yet. People can make cases for either side, and I personally think people like Allen Frances have been making strong cases in recent years, but it's really hard to settle this.
Another common criticism of the DSM is that it decontextualises things. So it obscures the world beyond the individual and their symptoms. So this is saying something about the limitation of this shared language: What is it leaving out? Some critics argue that the DSM doesn't pay much or enough attention to what we would call the social determinants of mental health. So things like poverty, marginalisation and discrimination. Others argue that it's relational contexts that get obscured by the language of the DSM. Whether they're historical or current relationships.
So we're talking here about things like trauma, attachment difficulties, child abuse and neglect. And I guess this returns us to the point of the DSM not providing causal explanations. You know, I personally think the language of trauma has become so popular in recent years because it does actually provide an explanation for people. It helps people feel confident that the ideas and interventions they're using are getting close to the causes of people's difficulties, rather than simply focussing on the symptoms.
For a long time the DSM has claimed to be atheoretical. It actually uses that word in the introduction of the document. But a lot of people point out that its focus on symptoms actually relies on a strongly individualistic world view. Personally I think it's a demonstration of pretty serious naivety for any group or people to suggest that their view is atheoretical. It makes me nervous when people use terms like that, because then I know that they're kind of blind to their own theories.
We've got another couple of criticisms here. A lack of scientific validity. So it's common for critics to argue that while the DSM demonstrates adequate reliability, so people using the same language, it lacks validity, which in the broader sense just means that the disorders that are described don't accurately capture the nature of people's distress or the nature of their impairment. Now, I'm confident there's some truth to this criticism for certain disorders, but I also think that many critics underestimate how difficult it is to create a document like the DSM.
So there's a lot of people who say that maybe our diagnostic categories should be decided by scientific evidence alone, rather than committees of experts, and that might be great, maybe, in the future, if we could do it. But between the publication of the DSM-IV and the DSM-5, a tremendous amount of funding from the US was dedicated to finding reliable biomarkers for various mental health diagnoses, and it came to almost nothing. So there's not a single disorder in the DSM that can be positively diagnosed using biomarkers.
And final criticism you can see up here is the issue of cultural insensitivity, or I think maybe perhaps a better word could have been cultural colonisation. So the way the DSM has been taken up means that it has this kind of colonising force. It kind of bulldozes its way through other ways of understanding. This has been called the globalisation of the American psyche. That the Americans want everyone to use their dictionary. And other languages, other dialects are being lost in the process.
What I find particularly interesting is that this globalisation doesn't just affect how people interpret pre‑existing symptoms, but it actually influences the very way in which they experience suffering. So the very way in which their mental health problems are manifesting. You can see a quote here from the book you can see up there, 'In teaching the rest of the world to think like us, we have been, for better or worse, homogenising the way the world goes mad'. Now, much more could be said about this, because it's obviously a huge topic. We don't have time for that right now. My time is rapidly coming to a close.
On this slide I've highlighted what I think are the particularly important points for today's webinar. So the DSM gives us a common language, and that's no small thing. It's very productive in a number of different areas to have a common language. But like all languages, the language of the DSM and other similar diagnostic frameworks has its limitations. This language has blind spots, it has biases.
One of the major problems with diagnostic language is that it tends to gradually creep into the realm of what many people would consider to be normal human experience. Another problem is that this language unwittingly leans towards individualism, and it makes it harder to see the connection between people's mental health and their environments. So their social and their material and their cultural environments. So this language can be decontextualising.
Our diagnostic categories are not scientific countries. Nobody who's involved in their production is pretending that they are. They're cultural products. And culture changes, languages change. We can reimagine the language of mental health or child mental health, and I think that's in part what we're trying to do here today, and what we're trying to do in this series of webinars. But I also think we need to keep sitting with this language of diagnosis, and we need to reckon with it, and worth with it, because it's very influential. It currently has a hold on a number of people, and I suspect that changing it in any way is going to be a very gradual thing.
So thank you all for listening. I am now going to pass back to Frank, who is going to tie everything up very neatly for us.
PROF OBERKLAID: Thanks very much, Rhys and Anthea. That's a terrific lead-in to the last part of this webinar. So this is a definition of mental health. A lot of the literature quotes this definition, which is a fairly old definition, but because it comes from WHO it's got some sort of credibility. It's a very broad definition, it's pretty vague, to my way of thinking, and I think your average parent, your average practitioner is going to sort of scratch their head, looking at the utility of that.
'Mental health is a state of wellbeing in which every individual realises his or own potential' et cetera, et cetera. You get lost in that definition a little bit, I think. But when we say mental health, many parents think mental illness. And many parents are really reluctant to admit their child has a mental health problem. And that really speaks to what Anthea said earlier on, and that then leads to delay in getting support for their children. So when we talk mental health, lots of parents will default to mental illness, and then they'll go from there to psychiatry, diagnosis, drugs, we don't want our kids on drugs.
And there's another group of parents that will say yep, I've got a 10-year-old boy, and he's got a bit of a temper and he smash a couple of windows and he beats up his sister, and yep, he's been expelled from school a couple of times, but he doesn't have a mental health problem. And so when we talk about mental health, do we mean treating mental health problems, or do we mean promoting mental health? And there's been lots of words that different professionals and parents have used to describe children with mental health problems.
Social-emotional problems, behavioural issues. I've heard some people say that behavioural issues are not the same as mental health problems. It's a sort of a lower order of concern. Mental health conditions, DSM definitions, all these acronyms: ADHD, ASD, OCD, CD, ODD et cetera, with huge overlap between these various behaviours, as Rhys inferred. And the problem is that some services are diagnosis-specific. That is, you need to reach a threshold for a diagnosis before you are eligible to receive the sort of services that you need.
There have been attempts to define a common language. This is from Beyond Blue. And this is not intended as a criticism, but they've tried to define a common language, because of their understanding that the terminology is confusing. So one part of their website says mental health is about wellness rather than illness; and then they go on to say: 'To make things a bit clearer, some experts have tried coming up with different terms to explain the difference between "mental health" and "mental health conditions". Phrases such as "good mental health", "positive mental health", "mental wellbeing", "subjective wellbeing" and even "happiness" have been proposed by various people to emphasise that mental health is about wellness rather than illness. While some will say this has been helpful, others argue that using more words to describe the same thing is part of the confusion.'
So this is mental health. It's not the DSM criteria that Rhys was talking about. And finding a common language for all these different groups of professionals is challenging. So the common language of DSM that Rhys talked about is a common language for diagnosis. And it might be a common language for those people working in the mental health space, but it doesn't resonate with parents, it doesn't resonate with preschool teachers or nurses or school teachers. And there's a huge gap, huge lack of resonance in the language that the education practitioners use and the health profession use. So the education profession tends to use terms like wellness and wellbeing and resilience, and the health sector usually defaults to DSM diagnoses.
So we suggest that perhaps getting away from diagnoses completely, getting away from this notion of mental health and mental wellbeing, and the various disorders, towards a continuum. And this is what we propose, four anchor points. And it really normalises a lot of the language of child mental health. So we want all children to be healthy. Inevitably in every single child's life course there are going to be little blips in their wellbeing. Sitting for an exam, getting sick, a transition to a different class, et cetera. We hope that children will cope with those sort of transitions and those blips, and the role of parents and the role of teachers and other professionals is to build resilience and to help them cope.
There are also children that are going to start to struggle, for whatever reason. And our role surely should be to pick up those kids that are struggling, whatever they're struggling for, and intervene at that stage to stop children getting unwell. So that's moving away from diagnoses. Now, I'm not suggesting for one moment that we should stop using diagnoses forever. But particularly in those early stages, where parents are struggling with looking after their children, the sort of things that Anthea was talking about, in the primary care sector, in schools, in maternal and child health nurses, they shouldn't need to make a diagnosis to get help for these kids. The fact the child is struggling should be an absolute reason to refer if they need to, or to intervene if they need to, to find out why those children are struggling, and to make sure that children and their parents get the sort of supports and services that they need.
And then further down that continuum, when the kids get to perhaps the secondary or the tertiary sector, that's when diagnoses may well be useful. So I'd like to stop there, I think, and I think we do have enough time for some questions.
MR BOWDEN: Thanks so much for that, Frank. And equally to Anthea and to Rhys as well. And we'll just wait for Anthea to come back online. There she is. And I can see we've actually got quite a number of questions coming through from the audience, which is really great. So I just, I guess, want to reflect on some of the things that I heard in your presentations which I thought were fantastic, and that was really around sort of the number of hurdles that we, that parents sort of experience in terms of supporting their children, and from hurdles, you know, even within their home, sort of identifying symptoms and knowing where and how to seek help from, and then also barriers, I guess, or hurdles accessing services, and those barriers that we create sort of as a system or through the DSM, as Rhys mentioned.
But one thing that I did hear that was quite encouraging, in Anthea's presentation, was really around a number of those professionals that were listed by respondents to the Child Health Poll were really a lot of the people that I think we probably have online today, and Frank also mentioned those around sort of teachers, early learning professionals, nurses. So not necessarily people we can consider necessarily mental health professionals, but sort of working in the periphery. So I'm going to go to some of the questions that have come through here from the audience.
And there seems to be quite an interest in sort of the parents' understanding of child mental health. We might first start with those. Ones around, I guess, just resources that are available for parents, and equally for schools, to sort of support parents in expanding their mental health literacy, and close that circle, I guess, around primary aged children. So I might first go to Anthea, and then we'll check in with Frank or Rhys if they have anything they want to add to that.
DR RHODES: Thanks, Mitch. Yes, there certainly are increasingly a lot of resources available, and I think one of the projects that's happened in more recent times through Beyond Blue has been Be You, which is their online suite of resources that are very much targeting at parents, but also at educational professionals, so teachers and early learning professionals, to provide that level of understanding around what to look for and how to recognise where there might be problems, and how to engage with a family around navigating help. So definitely I would direct people towards those.
There are also other resources that are very much parent facing with the Raising Children Network, and I'm sure Frank can talk more about that as well, but a lot of those are also really appropriate for professionals, not just for families. So they're written with parents in mind, but really very helpful as well for anyone working with parents. And a good resource to perhaps look at together with families sometimes too. So I think they would be two good places that I would direct people to in the first instance. Did you have anything to add, Frank?
PROF OBERKLAID: I would agree. It's interesting that since COVID, since the pandemic, there's been a huge increase in hits to raising children, and what they're looking for has changed. So instead of crying babies and weening and breastfeeding, there's a lot more hits on behaviour. The other thing that we've done in the last six months, there's now a mental health landing page for raising children. So we've taken all of the content all over the website now and focussed on mental health, and there's now - and it's literally an A to Z of mental health issues, and that's designed for professionals rather than for parents.
MR BOWDEN: Great. That's - - -
PROF OBERKLAID: So that's a very, very rich resource.
MR BOWDEN: Both ends, there. Yeah, and I guess there's sort of another adaptation of that question, and I think it's building on that, so probably either one of you could field this one, and it's really around that notion that Rhys talked about around the pathologising of quite expectable human experiences, and whether there's any sort of reflections from yourselves, having worked with families, around how to approach parents that might not have that mental health literacy, and may then become defensive when the issues are more relational rather than necessarily mental health or something a little bit more - that might fit under a diagnosis.
DR RHODES: Yeah. I'm happy to speak to that, if you like, first, Mitch. And some of the things I say I'm sure Frank with echo, because he taught me many of them, but I think it's always really helpful with families, and in my clinical practice I certainly do this, to focus on function. So not so much on a label or a diagnosis or even, necessarily, in the first instance, a cause, because that can also bring with it a lot of baggage that might be wrapped up in all kinds of things for that parent and their own experiences, but rather starting with the child and their function. So what is it that is making life difficult for them. You know, what is it that they're struggling to cope with, and let's focus on that, and think about, you know, what's feeding into that, and what we can do to try and, you know, support and scaffold a child to alleviate that. And I think if you start there, it's often a much more productive conversation with the family than going in with concepts of labelling and cause.
MR BOWDEN: Yeah.
PROF OBERKLAID: Yeah, I would agree with that. In those situations where parents may be defensive, you certainly don't lead with a diagnosis, because that pushes them away. But I often frame it, as Anthea said, in terms of this must be really challenging for you as parents. And for primary care providers in the audience, or early childhood educators, the referral often is around look, we need to find ways of making it easier for you to manage his or her behaviour. So you frame it around something you're doing for the parents. And the beauty for me of that continuum is it's not just kids that struggle. Parents struggle as well. And families can struggle as well. And I don't think it behoves a lot of the professionals to really explore why they're struggling, because they may not have the training, the skills may be out of their area of confidence; but if they're struggling, that's an absolute okay reason to refer to somebody who can sort things out.
MR BOWDEN: Yeah.
PROF OBERKLAID: So in that instance where parents are defensive, you start with this must be really challenging for you when he or she does X, Y, Z; let's get some help to help you how to manage that; and that's a sort of backdoor way, then, of assessing the child. Who may end up with a diagnosis, mind you.
DR RHODES: Yes.
PROF OBERKLAID: But we really want to break down those barriers that Anthea talked about. The barriers that stop parents from getting early help.
MR BOWDEN: Yeah. I just want to pass this one through to Rhys I'm wondering whether, Rhys, whether you came across anything in the research you did for the paper that you wrote, the emerging minds and CFCA paper that you spoke about earlier, and it's really around whether there's sort of any checklists or any particular diagnostic screening assessment tools that you came across, or that we're aware of as a team here, around identifying mental health issues in young children. So particularly for that younger, quite younger cohort, or is it the same standard set?
DR PRICE-ROBERTSON: There's a kind of DSM equivalent for younger children. I think there's a zero to three version and a zero to five version, and it's called - maybe, Frank or Anthea, if you know this, you could help me out - I forget the name, but it has zero to three in the title, and zero to five in the title.
MR BOWDEN: Yep.
DR PRICE-ROBERTSON: And it's been designed for exactly that, to provide much more kind of detailed definitions around the types of things that infants and very young children will experience. But I - my understanding is it's nowhere near as widely used as the DSM. So, you know, that's I guess why I wanted to speak about the DSM as a - because it infuses kind of the way that so many of us speak and think. Certainly, if people are looking for them, though, you can find - there's, you know, there's a field of infant mental health and child mental health, so you can find frameworks there and a different kind of language there, but I just - I don't know how widely used it is compared to the DSM.
MR BOWDEN: Sure.
PROF OBERKLAID: Yeah, I think there's - - -
DR PRICE-ROBERTSON: Before we finish - well, I just want to do - I just didn't get a chance to jump in on the very first question. I'll also add that in terms of resources that people might get follow up on, Emerging Minds. As well as Be You, Emerging Minds is a really good resource for practitioners in a lot of different fields, because it deals specifically with practitioners who are working with children aged zero to 12 and their parents.
MR BOWDEN: Yep.
PROF OBERKLAID: Yeah, I'll just agree, Emerging - - -
MR BOWDEN: And also on that - sorry, you go.
PROF OBERKLAID: Emerging Minds is a terrific set of resources. There are lots of so-called screening tests. The problem with some of them is the way that they're used, about people reaching a threshold before they're referred. And I really have a position against that threshold. So a screening test will say, well, if you score over 8, then it's likely you've got condition A or B. What if you score 7? I mean it doesn't mean that the child doesn't need help. So that black and white, binary threshold thing is something that I don't think serves parents well, because it may falsely reassure.
MR BOWDEN: Yeah.
PROF OBERKLAID: And just because you score less than the cut-off doesn't mean that parents wouldn't benefit, or the child wouldn't benefit from some sort of support or intervention.
MR BOWDEN: All right, so I think this one's probably best fielded by you, Frank, given that it's a reflection on the continuum that you introduced us to just recently. And this one's about how we can help support parents to spot the differences between children that might be coping versus struggling, and what language is going to be useful around the signs and the symptoms, and not only useful but more meaningful for parents.
PROF OBERKLAID: I think we just ask parents the general question, 'How is your child doing?' And if they've got concerns, they may not use the word struggling, but I think you can interpret what they say as meaning not everything is okay. It depends on the context, I think. And if they are seeing a paediatrician or a GP and they go with an issue, then that opens up some space, in a childcare setting or a preschool setting, it's a different conversation again. But most parents really do tune into their kids. And I think that open question, open up a lot of space, 'How do you think your child's doing?', or 'Do you have any concerns about your child?'; parents will generally articulate their concerns. And as I said, they may not say my child is struggling. They may say, well, he's a little flat these days, or I think she might be a little worried about things, or she's getting bullied at school; parents will use their own language, provided that the professional gives them that open space, with a very open‑ended question.
MR BOWDEN: M'mm. Yep. And is the language around some of the indicators of coping and struggling, are those questions similar to what we might see in the DSM? And maybe you or Rhys can answer that. So I think are we encouraging practitioners to still ask questions about sleep or diet or attentiveness, or, you know, like affect; are we using - are we giving parents that language, if they're not offering it when we say how is your child going? If they don't have the language there, are we providing the prompts I think is the question.
PROF OBERKLAID: Well, if I could just jump in first, Rhys, I think it depends on the context. If the child comes to see - if a parent brings their child to Anthea or myself, around an issue, and we take a history, we may inject those sorts of words, because we really want to get a feel for what's going on with the child in the family. In an early childhood setting or a preschool setting, it's a different conversation. In those instances, you stay fairly broad and you ask the parent a sort of open-ended question. So I think it depends on the context.
MR BOWDEN: M'mm, yeah.
DR PRICE-ROBERTSON: Yeah, and I think it also depends on the words that - the word that's being used. I mean a word like anxiety, it obviously shows up throughout the DSM, there's a number of anxiety conditions in there, but people use that word in a much broader way throughout their lives - I'm feeling anxious about this, or my child is feeling anxious - without necessarily being associated with a diagnosable condition. So I think there's a number of - you know, there's parts of that diagnostic language that are certainly shared with a more - a general language we use to refer to our internal states, I guess. And something I would add, as well, to what Frank was saying, around, you know, providing the space for the parents to bring their own language; also, when the kids are a bit older, providing the space to bring their own language, and mirroring their language. And because it would have so much more kind of - often would have so much more resonance, and you can use the language that they bring, and how they describe their own experience.
MR BOWDEN: M'mm, interesting.
DR RHODES: If I can just add, Mitch, as well, the subtlety behind that question of, you know, drawing a line between struggling or coping. I think the key to unpacking that is asking how a child is coping. And it's really in the how. And that's when you might get parents sort of saying well, they're coping, but this is happening or that's happening, or they're struggling to cope. Because are they coping, there's something wrapped up in yeah, well, we're all coping, like as though, you know, that's a badge you've got to wear and get on with, but how are you coping. And that's the same for our children. And then you might get a little bit of what's actually behind the - what's needed. You know, how much is sitting underneath that ability to cope.
MR BOWDEN: Yes. Yes, because the yes or no or a sort of closed question around are you or are you not might get a yes or no, and that might be a true yes or no, if there's stigma around that or misconceptions around, or misunderstandings. Yep.
DR RHODES: Yes.
MR BOWDEN: I'm wondering - - -
PROF OBERKLAID: If I can just go back - if I can jump in - - -
MR BOWDEN: Sure.
PROF OBERKLAID: - - - and go back to a question that you asked before that Rhys answered about screening tests. The advantage - one of the advantages of the screening test or a checklist is that it does open up space and direct your conversation.
MR BOWDEN: M'hmm, okay.
PROF OBERKLAID: So forget about the scoring, but if parents are asked six or eight or ten questions, and again, it's context dependent, it gives you permission, almost, to say well, I notice here you've said X - - -
MR BOWDEN: Right.
PROF OBERKLAID: - - - tell me more about that.
MR BOWDEN: Yep.
PROF OBERKLAID: So that's the advantage. And rather than scoring it and having this threshold - - -
MR BOWDEN: Yes.
PROF OBERKLAID: - - - it does open up space where the professional can have an opportunity to talk more about things.
MR BOWDEN: Yes, so almost like prompts or reflective questions.
PROF OBERKLAID: M'hmm.
MR BOWDEN: Yep.
PROF OBERKLAID: Yep.
MR BOWDEN: There's another question here around how is our discussion on language around mental health relevant to intellectual disability. I'm not sure, Rhys, whether you want to have a go at answering this. So I guess there's that first part of the question, and then it's how do we define mental wellness for people who are unable to define that and advocate their own capacities or capabilities.
DR PRICE-ROBERTSON: M'mm. I think maybe Anthea and Frank might be better at jumping in with that question. More practical experience. Do either of you have anything to say about that?
PROF OBERKLAID: Well, I think that the concepts we're talking about, that continuum, pertains to all children. Even those that are delayed or have some sort of additional need. I don't think it's - I guess what I'm really interested in is sort of normalising, quote-unquote, the language of I'm not doing so well or I'm worried about something, without necessarily putting a diagnosis on them. So there's no difference between a child who's got an intellectual disability and a child who's cognitively normal; they feel sad, they feel anxious, they feel a bit flat, they struggle. So I think exactly the same approach to those children - - -
MR BOWDEN: Yep.
PROF OBERKLAID: - - - pertains to a child without those issues. Anthea - - -
DR RHODES: Yeah, and I guess there were challenges, as you highlighted, Frank, in the WHO definition, but it does also emulate that concept of being able to contribute, you know, sort of fully or wholly to your capacity, and that's where each individual's capacity is going to be different, and it's really about applying that at an individual level so that each child and person can be their best, and that's really what being mentally well is going to look like.
PROF OBERKLAID: Correct.
MR BOWDEN: Yep.
DR PRICE-ROBERTSON: And I think a problem - I guess a problem we have in certain areas, which Frank touched on before, is that in certain areas of the service system and maybe the NDIS is like this in parts, like children might need a mental health diagnosis to get access. And so there might be (indistinct) say if kids do have a disability, and they also are struggling, they're really struggling with their mental health, there might be reason for people in their lives, the way that our system is structured at the moment, to use that mental health - use that diagnostic language. And I think that's unfortunate. It's not as bad here as it is in America, but it still exists in parts of our service system.
MR BOWDEN: Yep.
PROF OBERKLAID: Yeah, it certainly does exist. It exists in schools. I think Anthea and I have lots of experience of this, that children often need a diagnosis or reach a certain threshold in order - - -
DR RHODES: Yeah.
PROF OBERKLAID: - - - to get the support they need. And it gets back to something Anthea said before about the child's functioning. And there's moves now to change away from needing a diagnosis to get services towards a functional assessment. What does this child need, in this context, this year, in order to fulfil his or her potential.
MR BOWDEN: Yeah.
DR RHODES: M'mm.
PROF OBERKLAID: And it's diagnosis blind. And it's really about, as Anthea said, the child's functioning. So we should all support that, I think.
MR BOWDEN: Diagnosis blind. I like that. So thank you for those reflections. There's a couple that have come in here through - around these aspects of culture. And I think it kind of touched on all three of your presentations, so I'm open to whoever wants to sort of jump in first and answer this. It's really around are there particular considerations or particular recommendations that you have around this - the application of the language that we're sort of suggesting or the way that we're - the language we're moving towards, with cultures such a Aboriginal and Torres Strait Islander cultures, or cultures where their first language is not English, and how this - if any of you have tried this kind of continuum language on for size, how that's worked so far with those cultures.
DR PRICE-ROBERTSON: Again, I think it would be about like what we touched on before, talking about the language that parents use or that children use, it's, I think this kind of work, assisting children and families, can be so much more effective if you're actually taking up the concepts that people themselves are using. So if you're working with someone from a different cultural group and they have a certain way of understanding, maybe you can try to impose your understanding on them, but I think most often that's not going to work that well. Yeah, so I think in practical purposes, just working with people who have different cultural understandings is probably going to work better if you, as much as is possible, and as much as you're able to with your own understandings, you meet them somewhere in the middle.
MR BOWDEN: Yep.
DR PRICE-ROBERTSON: But then also I guess more broadly I think - you know, I just go back to the point I made at the end of my talk about this being our - the diagnostic systems we use, like the DSM, being a cultural protect of our own, and I think it - we need to more broadly have a kind of humility to recognise that these aren't - these aren't scientific truths. They're developed in a number of different ways, and they're actually - you know, they're cultural protects of our culture. So we need a kind of cultural humility, I guess, as we're doing this work.
MR BOWDEN: Yep.
DR RHODES: Yeah, completely agree, Rhys. I think we cannot overestimate the importance of that. That we really have to understand that to the whole of health, not just mental health, but you know, we bring a framework, and that may not be the framework that fits with any given family or individual, and so until you can look at it from a perspective that they're going to be able to stand alongside you with, you won't make progress. So we always have to think how can we be culturally competent as we approach this.
PROF OBERKLAID: And that's family-centred practice.
DR RHODES: Yeah.
PROF OBERKLAID: You start where the family is.
DR RHODES: Yeah.
MR BOWDEN: Yeah, yep. And there's just one more I think that we should touch on before we wrap up for today, and this one, I think is going to be directed at you, Anthea, and it's really around sort of the representativeness of the National Child Health Poll. So there's questions in here around were parents of families - sorry, parents of children within rural and regional communities surveyed, and also Aboriginal and Torres Strait Islander communities.
DR RHODES: Thanks, Mitch, and that's a great and really important question from those people who asked it. So we did have a nationally representative picture in terms of remoteness of respondents, so we do have both metropolitan, urban, and regional and remote groups represented in that sample, and we have looked at how differences might or do play out for them, and particularly in having services and being able to access services, which is a different part of the study, we saw significant differences, but in terms of actually having that level of knowledge that I talked about recognising problems and being able to think about whether they might seek help, that looked very similar for people living in more urban environments, metropolitan environments, versus regional and remote.
When it comes to Indigenous representation in the sample, we had just under 2 per cent, which is, you know, just shy of our national picture, but certainly very small numbers, and this is not the appropriate study or methodology to really understand the complexities of, you know, Aboriginal and Torres Strait Islander people when it comes to mental health literacy. So I certainly don't want to suggest from this study that we can extrapolate that or do that at all. I think very different - very different methodology is needed, and has been done in some great work, and more work needs to be done where qualitative work with communities, focus groups to really understand how those families culturally do look at things like mental health for us to be able to understand how we can connect with them. Yeah.
MR BOWDEN: Totally. All right, and just to wrap up, I would love to hear just a one sentence, two-sentence kind of key message or key call to arms from each of you, to wrap up on. So maybe, Rhys, we'll start with you, for practitioners, and as we can see, education and early learning professionals on the line, and even some policymakers out there, what would be your call to action?
DR PRICE-ROBERTSON: You've put us on the spot here, Mitch.
MR BOWDEN: I know.
DR PRICE-ROBERTSON: I would say - I would say diagnostic language has its place, but we just need to be very careful about when we apply it. And there's probably a lot of areas in the mental health system where we don't need that kind of language, and it's only as we get further and further up towards the secondary and tertiary levels of the system where that language becomes increasingly important, and we've got to be careful not letting it kind of colonise every aspect of our mental health system. All our health and welfare systems.
MR BOWDEN: Great one. Thank you. How about you, Frank?
PROF OBERKLAID: Yeah, I think I would echo what Mitch said. And I guess I'm interested in sort of normalising the language of mental health. That we all feel sad at times, we all feel anxious at times, we all feel a bit flat at times, particularly now with COVID. It doesn't mean we have a mental health condition. And so I just recoil against this pathologising of sadness and so on.
MR BOWDEN: Yeah.
PROF OBERKLAID: That doesn't mean that you're always okay. And so the other message is, for parents particularly, seek help early. There should be no stigma at all in reaching out and saying look, I'm really struggling, I need some support.
MR BOWDEN: Yeah, yep. Great reflections. And you, Anthea, to finish off?
DR RHODES: I think as an individual whatever capacity you're working in with children and families to be mindful of your own bias and framework. I think the thing that we learnt from reaching out to families is so many people come from a perspective that's quite different to many of us in the way we work and practice. So I would step right back and try and see things from the family's point of view. You know, assume nothing when it comes to a level of understanding; be curious as to what they know and what they think is going on, in order to really help them understand mental health and wellbeing and support their child.
MR BOWDEN: M'mm. It's that meeting them where they're at, the family-centred practice again. Thank you.
DR RHODES: Absolutely.
MR BOWDEN: All right, I think that's it for today. So we might wrap it up there. Thanks, everyone.
PROF OBERKLAID: Thank you.
DR RHODES: Thank you. Pleasure to be here.
DR PRICE-ROBERTSON: Thanks, Mitch. Thanks, everybody.
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1. Getting the language of child mental health right
Words matter webinar series
Professor Frank Oberklaid AM
2. The elephant in the room
3. Child mental health issues are common but under-recognised and under-funded
- Half of all adult mental health problems emerge before the age of 14.
- 14% of Australian children aged 4-17 years have a diagnosable mental health condition (580,000 children nationally).
- 7/10 most common presentations to paediatricians are for mental health.
- More than 50% of children with mental health issues don’t receive professional help.
- Existing Child & Adolescent Mental Health Service funding assists only 1/3 to 1/2 of children and young people with severe or complex mental health needs.
(Lawrence et al., 2014)
4. Prevention is more effective and cost-effective than treatment
Alt text: Graph showing the intervention effects and costs of social-emotional mental health problems over time (Bricker)
5. Missing the elephant in the room
- Reliance on parents
- Diversity across professionals involved with children
- Fragmented service system
- No silver bullets
- Uncertainty where to invest
- Difficulty in constructing a coherent narrative
- No agreement on terminology
6. Child mental health literacy among Australian parents: A national study
Rhodes, A.,1,2,3 Measey, M.,1,2 O’Hara, J.,1 Hiscock, H.1,2,3
- Royal Children’s Hospital, Melbourne
- Murdoch Children’s Research Institute
- University of Melbourne, Department of Paediatrics
Conflict of interest: none declared
7. The first step to getting help is recognising when it’s needed
8. Background – role of health literacy
‘Health literacy lies at the heart of a person being able to take control of their own health care through making informed health decisions, seeking appropriate and timely care and managing the processes of illness and wellness.’
Australian Government Department of Health
Health Literacy Statement
9. Child mental health problems: Can parents spot the signs?
10. RCH National Child Health Poll
Aim: to explore levels of child mental health literacy among Australian parents
Est. Dec. 2015
17 polls published
>35,000 households polled
>60,000 children represented
Alt text: Screenshot of the RCH National Child Health Poll
Text description: Over-the-counter medicines - What are parents using and why?
Vaccination - We found the majority of parents support vaccination for kids. 95% of Australian parents keep their children's vaccines up-to-date, but a quarter have minor concerns about vaccines.
Top ten child health problems - Find out what the public identified as big problems for the kids health
Child mental health problems - Can parents spot the signs?
Top ten child health problems - Screen time emerged as the top big problem for the health of kids. Find out what else made the list. 58% of Australian adults say excessive screen time is a big child health problem
Flu vaccination - Find out the perspectives of Australian parents when it comes to the flu vaccine.
Summer safety - Are parents ready? Our poll found 1 in 4 are not confident administering CPR to a child.
11. Methods - Sample
- Cross-sectional online survey of a nationally representative sample of Australian parents of children aged 0-17 years
- Survey conducted as part of RCH National Child Health Poll
- Purposeful recruitment from established panel of >250,000 Australian adults
- Sample 2,032 parents, yielded data on 3,733 children
- Completion rate 73%
- Survey pilot tested (n = 200). Final survey fielded over 17 consecutive days in July 2017
- Study screened and approved by RCH Human Research Ethics Committee
Infographic - only 35% of parents are confident they could recognise the signs of mental health problem in their child
14. Recognising signs and symptoms
- Majority had good knowledge of teen mood disorders
- 1 in 3 did not know primary school-aged children can get ‘depression’
- 1 in 4 lacked knowledge of internalisation problems in primary school-aged children
- 1 in 3 did not recognise that persistent sadness or frequent tearfulness is not ‘normal’
- 1 in 5 believed a baby’s brain is too immature to develop social or emotional problems
15. Factors that would help parents identify mental health problems in their child.
Alt text: Graph showing the factors that would help parents to identify mental health problems in their child.
Some more time talking to and connecting with my children - 56%
Learning more about the physical and day-to-day signs of soca, emotional and behavioural problems in children - 54%
Learning more about social and emotional health and development in children in general - 49%
Having more information about how my child is going at school - 43%
Having a doctor, psychologist or other professional to talk about these things - 31%
16. Help-seeking behaviours
Infographic - 44% of parents report being confident in knowing where to seek help if their child is experiencing mental health issues
17. Help-seeking behaviours cont.
Infographic: 1 in 3 parents think mental health problems in kids might be best left alone
Male parents, sole parents, speaking a Language Other Than English (LOTE) at home all predictors for belief that problems are best left alone
1 in 10 parents indicated that stigma played a role in their help-seeking decision making
- Lower mental health literacy among some parents:
- sole parents
- male parents
- parents of younger children
- Gaps in recognition, knowledge of signs and symptoms, attitudes to treatment and ability to seek help
- Regular GP associated with higher levels of mental health literate responses
- A need to build parent mental health literacy
- Accessible and common narrative about mental health
- Further research on the gaps in parent mental literacy
- Consider mental health literacy in service planning and policy
20. Implications cont.
We know young minds matter …
the words we use to talk about young minds matter too
21. References (RCH National Child Health Poll)
- DeWalt, D. A., & Hink, A. (2009). Health Literacy and Child Health Outcomes: A Systematic Review of the Literature. Pediatrics, 124, S265.
- Hiscock, H., Bayer, J., Lycett, K., Ukoumunne, O., Shaw, D., Gold, L. et al. (2012). Preventing mental health problems in children: the Families in Mind population-based cluster randomised controlled trial. BMC Public Health, 8(12), 420
- Hiscock, H., Neely, R., Lei, S., & Freed, G. (2018). Paediatric mental and physical health presentations to emergency departments, Victoria, 2008-15. Medical Journal of Australia, 208(8), 343-348.
- Johnson, S. E., Lawrence, D., Hafekost, J., Saw, S., Buckingham, W. J., Sawyer, M. et al. (2016). Service use by Australian children for emotional and behavioural problems: Findings from the second Australian Child and Adolescent Survey of Mental Health and Wellbeing. Aust N Z J Psychiatry, 50(9), 887-898.
- Kelly, C. M., Jorm, A. F., & Wright, A. (2007). Improving mental health literacy as a strategy to facilitate early intervention for mental disorders. Medical Journal of Australia, 187(7 Suppl), S26.
- Lawrence, D. J. S., Hafekost, J., Boterhoven De Haan, K., Sawyer, M., Ainley, J., & Zubrick, S. R. (2015). The Mental Health of Children and Adolescents: Report on the second Australian Child and Adolescent Survey of Mental Health and Wellbeing. Canberra: Department of Health.
- O’Connor, M., Casey, L., Clough, B. (2014). Measuring mental health literacy – a review of scale-based measures. Journal of Mental Health, 23(4), 197-204.
The authors of this study gratefully acknowledge the contribution of the RCH National Child Health Poll team and the parents across Australia who participated in the survey.
23. Diagnostic language and child mental health
Australian Institute of Family Studies
Presented as part of CFCA Webinar ‘Words matter: Getting the language of child mental health right’, August 12, 2020.
Alt text: Screenshot of the CFCA and Emerging Minds paper no. 50 - Diagnosis in child mental health: Exploring the benefits, risks and alternatives.
- Presentation based on a paper co-produced by the Australian Institute of Family Studies and Emerging Minds.
- Outline of presentation
- Background on the DSM
- Strengths of current diagnostic systems
- Criticisms of current diagnostic systems
Alt text: Coverpage of the fifth edition DSM-5 (Diagnostic and statistical manual of Mental Disorders)
- Called a bible; more like a dictionary
- Hugely influential:
‘Few professional documents compare to the DSM in terms of affecting the welfare of so many people.’
(Mayes & Horwitz, 2005, p. 265).
- Produced by the American Psychological Association
26. DSM cont.
- With the publication of DSM-III in 1980:
‘In a remarkably short time, psychiatry shed one intellectual paradigm and adopted an entirely new system of classification … Psychiatry reorganised itself from a discipline where diagnosis played a marginal role to one where it became the basis of the specialty. The DSM‑III emphasised categories of illness rather than blurry boundaries between normal and abnormal behavior, dichotomies rather than dimensions, and overt symptoms rather than underlying etiological mechanisms.’
(Mayes & Horwitz, 2005, p. 250).
- Categories of illness, rather than blurring boundaries
- Dichotomies, rather than dimensions
- Descriptions of symptoms, rather than explanations
27. Strengths of current diagnostic frameworks
- A common language for service providers
- A reliable framework for researchers
- A coding system for statistics and administration
- Increased clarity in legal proceedings
28. Criticisms of current diagnostic frameworks
- Pathologising normal human experience
- Medicalising difficult but expectable human experiences; e.g. sadness, grief, shyness, disappointment and inattentiveness
- Some argue specific diagnoses shouldn’t qualify as mental health conditions (e.g. ADHD)
- Others accept the disorders but think the thresholds for diagnosis are too low
- Very difficult to settle because we don’t even have a clear definition as to exactly what a mental disorder is
29. Criticisms of current diagnostic frameworks part 2
- De-contextualising mental health difficulties
- Social determinants of mental health (e.g. poverty, marginalisation and discrimination)
- Relational contexts (e.g. trauma, attachment difficulties, child abuse and neglect)
- DSM claims to be ‘atheoretical’ but many argue it actually relies on a strongly individualistic world view
30. Criticisms of current diagnostic frameworks part 3
- Lack of scientific validity
- Cultural insensitivity
‘Over the past thirty years, we Americans have been industriously exporting our ideas about mental illness. … It turns out how people in a culture think about mental illnesses … influences the diseases themselves. In teaching the rest of the world to think like us, we have been, for better or worse, homogenising the way the world goes mad.’
(Watters, 2010, p.2)
- Categories of illness rather than blurry boundaries
- Dichotomies rather than dimensions
- Descriptions of symptoms rather than explanations
- Strengths of current diagnostic frameworks
- A common language for service providers
- A reliable framework for researchers
- A coding system for statistics and administration
- Increased clarity in legal proceedings
- Criticisms of current diagnostic frameworks
- Pathologising normal human experience
- Decontextualising mental health difficulties
- Lack of scientific validity
- Cultural insensitivity
32. References (AIFS)
- Mayes, R., & Horwitz, A. V. (2005). DSM-III and the revolution in the classification of mental illness. Journal of the History of the Behavioral Sciences, 41(3), 249–267. doi:10.1002/jhbs.20103
- Price-Robertson, R. (2018). Diagnosis in child mental health: Exploring the benefits, risks and alternatives (CFCA Paper 48). Melbourne, Vic.: Australian Institute of Family Studies.
- Watters, E. (2010). Crazy like us: The globalization of the American psyche. New York: Free Press.
33. Defining mental health
‘Mental health is a state of wellbeing in which every individual realises his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.’
(Word Health Organization, 2004)
34. But when we say mental health …
- Many parents think mental illness.
- Many parents are reluctant to admit their child has a mental health problem.
- Do we mean promoting mental health (i.e. the WHO definition) or also treating mental health issues?
35. Describing children with problems?
- Social emotional problems
- Behavioural issues
- Mental health conditions
- DSM definitions - ADHD, ASD, OCD, CD, ODD, anxiety disorder, depression, etc.
- Some services are ‘diagnosis specific’
36. Attempts to define a common language
'Mental health is about wellness rather than illness.’
‘To make things a bit clearer, some experts have tried coming up with different terms to explain the difference between ‘mental health’ and ‘mental health conditions’. Phrases such as ‘good mental health’, ‘positive mental health’, ‘mental wellbeing’, ‘subjective wellbeing’ and even ‘happiness’ have been proposed by various people to emphasise that mental health is about wellness rather than illness. While some say this has been helpful, others argue that using more words to describe the same thing just adds to the confusion’.
37. Finding a common language for all of these groups***********
38. The mental health spectrum
Infographic showing the Mental health spectrum
Healthy > Coping > Struggling > Unwell
Adapted from Centre for Mental Health
(Mentally Healthy Schools)
39. Summary – language matters
- Danger of medicalising normal reactions
(e.g. COVID-19, loss or sadness)
- Can contribute to stigma
- Good communication between different professional groups
- Can create barriers in communication
- Suggested spectrum creates common language that avoids stigma and facilitates early identification, early intervention, early referral
40. References (Centre for Community Child Health)
- Beyond Blue. Retrieved 28 July 2020 from www.beyondblue.org.au/the-facts/what-is-mental-health
- Bricker, D., Seibert, J., & Caruso, V. (1980). Early intervention. In J. Hogg & P. Mittler (Eds.), Advances in mental handicap research (pp. 225-266). New York: Wiley.
- Lawrence, D., Johnson, S., Hafekos, J., Boterhoven de Haan, L., & Sawyer, M. (2014). The Mental Health of Children and Adolescents: Report on the second Australian Child and Adolescent Survey of Mental Health and Wellbeing. Retrieved 29 July 2020 from https://www1.health.gov.au/internet/main/publishing.nsf/Content/mental-pubs-m-child2
World Health Organization. (2004). Promoting mental health: Concepts, emerging evidence, practice (Summary report). Geneva: World Health Organization. Retrieved 28 July 2020 from www.who.int/mental_health/en/
Questions answered during presenter Q&A
- What resources that are available for parents and schools to help expand mental health literacy in support of children?
- Are there any checklist or specific diagnostic/screening assessment tools for identifying mental health in young children?
- How can we help support parents to spot the differences between children that might be coping verses struggling? What language can be useful around the signs and the symptoms that is more meaningful for parents?
- Based on the continuum approach, should practitioners ask parents similar questions to if they were being guided by the DSM? For example, are practitioners encouraged to prompt about sleep or diet or attentiveness or affect? And should practitioners give parents that language if they’re not offering it when asked “how is your child going?”
- How is this discussion relevant to intellectual disability? How do we define mental wellness for children who are unable to define that and advocate their own capabilities?
- What are the considerations and recommendations regarding the application of “continuum language” within cultures such as Aboriginal or Torres Strait Islanders or cultures where their first language isn’t English?
- Were parents of children within rural and regional communities, and Aboriginal and Torres Strait Islander parents surveyed in the National Child Health Poll?
This webinar was held on Wednesday 12 August.
It is relatively common for children to experience mental health problems. Yet, without a shared understanding of child mental health between parents, communities and service providers, many do not receive the support they need. Getting the language of child mental health right is a crucial step in building this shared understanding, connecting children to necessary supports and preventing mental health difficulties into the future.
This webinar was the first of a two-part series exploring the importance of language in advancing child mental health. Building on a past CFCA webinar that focused on diagnosis in child mental health, this webinar:
- explored how parents’ mental health literacy affects how they access support for their children
- considered the risks and benefits of applying diagnostic labels to children
- proposed a way forward for talking about child mental health.
This webinar is of interest to professionals working with children and families in health, education and social and community service settings.
Find out more about the second webinar in this series here: Words matter: How to use frames effectively to advance child mental health.
- Diagnosis in child mental health: Exploring the benefits, risks and alternatives
This CFCA paper is designed to encourage practitioners to critically reflect on the role diagnostic systems play in their work with children and families.
- Supporting children’s mental health during a pandemic toolkit
This Emerging Minds toolkit contains resources that will assist practitioners and parents and carers to support children’s mental health during pandemic events such as COVID-19.
- Child mental health: A time for innovation
This Centre for Community Child Health Policy Brief identifies an urgent need to formulate a comprehensive, sustainable and evidence-informed plan to effectively promote and improve the mental health of children and the adults they become.
- Child mental health: Building a shared language
This issue of InSight highlights the impacts of the language used to talk about child mental health in practice, policy and community contexts on the wellbeing of children; and calls for a shared language that is accessible to the key players in a child’s life, and communicated easily to children themselves.
- Child mental health problems: Can parents spot the signs?
The Royal Children’s Hospital National Child Health Poll is a quarterly, national survey of Australian households shedding new light on the big issues in contemporary child and adolescent health – as told by the Australian public. This resource shares the most recent findings.
- FrameWorks Institute
Working internationally and in Australia, the FrameWorks institute apply social science research to uncover the most effective ways of talking about social issues. This website includes toolkits and resources to inform the better use or frames.
Featured image: © GettyImages/AndreaObzerova