Co-production of research with those with lived experience: an example from an ADHD study

We have been posting about co-production in research over the last few weeks in a series of posts aimed at a researcher audience (‘Insights from Researchers on Co-Production’). We will also shortly have a parallel series of posts from the perspective of a parent of a child with a disability. In our post today, which is aimed at all readers, we will summarise the key findings of a study we recently published that involved working with children and their teachers to gain their insights into our intervention development. We hope to highlight not just how important their role was but actually how their insights were central to making sure our research would work and benefit them in their everyday life.

We interviewed children with ADHD and their teachers about their knowledge of ADHD, the strengths and challenges they faced at school, alongside what strategies they used to support these challenges. We had developed an intervention model around a range of principles and evidence from the research literature. This included for example our research that has shown these children show difficulties in multiple aspects of thinking including really broad aspects of memory and an extensive range of strategic thinking skills such as cognitive flexibility and planning. A second principle of what is called ‘taking a transdiagnostic approach’ (considering presence of multiple conditions e.g. ADHD + ASD) was influenced by the growing array of research studies highlighting the impact of co-occurrences including our own work. It was very important to us though that as well as being influenced by research evidence that the experiences of those with lived experience were also represented in refining the intervention. Not only is this just the right thing to do morally, but taking this approach also ensures we can translate these principles from research into practice effectively. In this case, insights gained from the experiences of teachers and children within the school context were really important. Knowing their perspectives can help ensure research work is feasible in complex environments such as classrooms.

A key finding was the children had little understanding of what the core characteristics of ADHD are. This highlighted that our planned use of Psychoeducation (i.e. their understanding of their strengths and difficulties) in the intervention was critically important for children themselves and not just for those that support them such as their parents and teachers.

Another key finding was teachers’ insights into the strengths of children with ADHD. Surprisingly there are very few studies that look at the strengths of these children as most are focused on the difficulties they have. Teachers in our study commented that many of these children had great imaginations and that this was a positive attribute in areas such as literacy. It is very easy to become focused on supporting difficulties of neurodivergent children and neglect thinking about strengths but actually these attributes may be very important in overcoming the difficulties these children show.

The interviews also probed children and teacher’s use of strategies to support children with ADHD in the classroom. Here teachers commented both on using strategies with the particular child with ADHD but also using the strategies classroom wide. This insight has been invaluable for us and has enabled us to promote both the use of strategies when working with the child individually and also in taking a whole class approach. Children also mentioned using strategies they found useful that the teachers were not necessarily aware of. These often related to personal interests and use of toys such as fidget toys. These interviews and broader Patient and Public Involvement (PPI) work we have undertaken has helped us to incorporate important features that really matter to children such as drawing on their special interests e.g. lego and incorporating the use of the toys they like to play with in intervention activities.

We hope this blog post highlights the importance and value of involving children and those who support them directly in research decisions and practices. There is a common saying ‘nothing about us, without us’ that is increasingly used in the area of research design and procedures. Ultimately if we want to ensure our research better understands children and is optimally effective at supporting them we need to ensure their experiences are central to the development of the research.

Visual production credits: SDI Productions via Getty Images

Thinking skills and learning maths in children with ADHD

Successful maths learning is linked to a range of skills involving processing of numbers. When a child finds learning maths tricky these number skills are often focused on as the source of the difficulty. Learning maths also relies on having good thinking skills such as efficient memory. Much less focus though has been given to the importance of these thinking skills. Understanding this relationship is particularly important for helping children with ADHD learn maths as many of these children show difficulties with these thinking skills.

We recently published a systematic review, which is a ‘study of studies’ on this topic. Our review looked at published papers of studies that had researched the relationship between thinking skills and maths learning in children with ADHD. This review revealed that there are very few studies that have looked at this important relationship – only 4 studies matched the criteria we had set. These studies differed from one another in a number of ways such as the tasks they used to assess thinking skills. However we were able to systematically review them and come to some conclusions about what research is telling us on this topic.

First, as expected, thinking skills were positively related to children’s maths performance. This means that better thinking scores were related to higher maths test scores in children with ADHD. Memory emerged as playing an important role in maths learning. There are different types of memory such as short-term memory where we hold information in a short term store and more strategic aspects of memory which involve not just holding the numbers in our mind but also when we have to update the information we are holding in memory. Updating is far more than just holding the numbers in memory but involved when you have to for example add or delete numbers and really actively update the information you are holding in your mind. Our review showed that this latter type of memory known as ‘working memory’ was particularly important for maths attainment in children with ADHD. Our own research studies has shown that many children with ADHD have difficulties in their working memory and it is therefore important that there is understanding that this may be contributing to any problems that the child is having with maths. Our EPIC intervention focuses on improving understanding and supporting this type of memory and ideas from our booklets may be useful in supporting children’s educational learning.

In our review we found differences between what is known as ‘verbal’ and ‘non-verbal’ types of memory and their relationship with maths. ‘Verbal memory’ involves memory processes such as those involved in rehearsal of number facts (e.g. repeating 5+5=10, 6+6 =12). What is referred to as ‘visuospatial memory’ in a nutshell involves seeing and representing information ‘spatially’. What is meant by that? The best way to understand this is with an example. So when working out what 6+7 adds up to – one way is to visually see 6+6=12 while at the same time working out 12+1=13 in your mind.

Our review seemed to suggest that verbal memory (such as being able to repeat numbers in your mind) was linked to numerical calculation skills (i.e. being able to add numbers). Quite differently, what is known as ‘visuospatial memory’ (described in the example above) was linked to children’s conceptual understanding which means being able to understand the rules of maths while calculating numbers. What does this all mean for children who have memory difficulties? This means that the type of memory difficulties children with ADHD (or other condition) have will impact the type of maths they have difficulties with. If they have typical verbal working memory they may not have difficulties with learning to add numbers. If they have reduced ‘visuospatial memory capacity’ though (see example above of visually holding numbers in mind) they may not be able to use conceptual rules that help us do maths as easily as their peers.

The key question is how can we help children with ADHD (or others with these thinking difficulties) with their learning? Reducing memory load is a really useful technique to support children with this type of difficulty, such as using a mini-whiteboard so they can see a visual breakdown of sums or using items like lego pieces to represent numbers. The child being active in their learning, such as using the lego pieces themselves to work out sums, can make a transformational impact on them wanting to participate as well as their understanding.

Much more research is needed on this important topic. We know that maths attainment can be an important predictor of many life outcomes such as career attainment. It is really important we understand the thinking difficulties that underlie being able to confidently engage in maths learning and develop strategies to support these children. This is not only important for them being able to access learning like their peers but also that they understand the everyday strategies they need to have a happy school experience.

Visual photo credit: Photographer valentinrussanov via Getty images.

ADHD in the news: media reporting in 2022

The Neurodevelopmental condition Attention Deficit Hyperactivity Disorder (ADHD) has historically received negative attention in the media in comparison to similar conditions such as Autism, Dyspraxia or Dyslexia. What is the current state of play?

It is clear there are improvements in reporting in comparison to common media reporting from the time I first started carrying out research on the topic almost 25 years ago.  Most media outlets are now reporting accurate information that helps the public understand the condition and its treatment. It has been really good to see articles reference the NHS and encouraging readers to find out more about ADHD directly from NHS websites such as this recent article about a ‘Love Island’ contestant who has a diagnosis of ADHD.  

There are also very positive reports in the media about ADHD framed around the celebration of neurodiversity. An example is a recent article in the Daily Mail about Grant Denyer’s wife Chezzi and the sense of empowerment her diagnosis of ADHD gave her.    

It has been really positive to see posts on ADHD in the media recently that highlight the impact of current world issues for those with ADHD. For example, a recent article in the Guardian wrote about the findings of a study commissioned by the digital bank Monzo on the topic of ADHD and finance management. The article highlighted the particular challenges adults with ADHD are having in the context of the cost of living crisis.  Very importantly the article featured life experiences of 3 adults with ADHD who spoke about things that made finance management easier for them. This included digital visual reminders used by their banks and banking tools that gave them control and transparency.   

There is still a way to go. Media articles still use wording that those with neurodivergent conditions such as ADHD and autism would find disempowering such as reference to ‘suffers from’ (here and here) from the condition.  Often these references are contained not just in the body of the article but also within the headline.   The reference to ‘suffering’ is really at odds with the key messages of these articles that highlight the importance of understanding and embracing the condition.

Negative and/or misleading reporting about common medications used to treat ADHD is still unfortunately evident in the media. Historically there has been concerns by researchers that their explanations of findings around the effects of ADHD medication were often only partially represented, meaning that some of the facts about medication effects were distorted.

In a recent article, one media outlet reported about a celebrity who had been diagnosed with ADHD and had started medication and who had posted on social media that they were ‘feeling very buzzy’. The headline they used ‘Abbie Chatfield reveals the effects of her ADHD medication as she begins treatment almost three months after being diagnosed: ‘Feeling very buzzy’ would seem to suggest that the impact of the medication on her was potentially negative. The importance of following our top tip of ‘Don’t Stop at the Headline’ is really highlighted with this article because as you read the article it is revealed that Abbie kept updating on social media and later reported feeling more focused and able to follow conversations better. 

If you want to find out more about ADHD the NHS has excellent summary information on their website. Organisations like the ADHD Foundation and ADDISS also have useful information and importantly links to useful resources. 

How does stimulant medication actually work on thinking skills?

We have previously posted about ‘myths around ADHD’ covering issues such as the lifespan nature of ADHD symptoms, common beliefs that ADHD is seen typically on its own and that those with ADHD are similar to each other. Another myth is that ADHD mainly affects behaviour. Our research, however, and that of many other groups has shown that thinking difficulties like memory, attentional control and planning are key difficulties for many children with ADHD.

Other myths around ADHD extend to stimulant medication, a common treatment for ADHD. So how do stimulants actually work? There is now considerable research evidence looking at how stimulants work. How do you know where to start in terms of which of these research papers should be considered? A good place to start is to look at whether there have been any reviews on the topic that have been done in a systematic way (what is called a ‘systematic review’) – this is like a study of studies. It brings together and reviews all papers on a topic and as part of the process assesses the quality of the studies and for example tries to find out if the studies are at risk of bias. It is even better if there is what is called a ‘meta-analysis’ on the topic. A meta-analysis merges the findings of individual studies and statistics are used to arrive at an overall effect across the studies.

Last year a meta-analysis was published on the topic of stimulant medication and thinking skills in children with ADHD. They found that stimulant medication improved a range of thinking skills – what are called ‘executive functions’. They include aspects of thinking such as ‘working memory’ (the mental workspace where you hold and organise information for a brief time) and ‘cognitive flexibility’ (being able to switch from thinking about different concepts or doing different parts of task). We know many children with ADHD have difficulties in these thinking skills and it is clear that the improvements we see in many children with ADHD while on medication likely reflect them being able to use their ‘executive function’ skills better. Larger doses of medication were not found to improve these particular thinking skills more than the effect of small doses.

Our own research has shown that stimulant medication improves these executive functions but has also highlighted that stimulants act on self-regulation which is a broader concept. Basically we found that despite the common understanding that this medication acts by slowing down the child so they can stop and think better actually this is too simple an explanation. We found that stimulants slowed down performance on tasks where it is good to stop and think (letting them make a plan or organise their thoughts). But stimulants also actually speeded up performance – this time on a task where the child was encouraged to perform the task as quickly as possible (doing so doesn’t usually cause more errors). So it appears that stimulants improve ‘self-regulation’ – allowing the child to act more appropriately to the requirements of the task they are doing.

While the executive function meta-analysis study looked at quite a range of thinking skills many everyday thinking skills such as planning, problem solving, time management, and self-monitoring were not examined. This reflects a lack of research studies that have examined these broader thinking skills. EPIC has been developed to help support the development of all of these thinking skills. Ideas for how to facilitate understanding of an individual child’s thinking skills and strategies to support them can be found in our free downloadable booklets. EPIC focuses on the child as a individual as children who are ‘neurodivergent’ (when someone’s thinking, learning or behaviour differs from what is considered typical) differ from one another in their thinking skills. This may be due to the presence of a second or even third co-occurring condition (e.g. having a diagnosis/symptoms of ADHD versus both ADHD + autism). Whatever the reason it is really important we understand the thinking skills of each individual neurodivergent child as an individual. EPIC materials can be used to help identify what lies behind an individual child’s difficulties whether that is with the school experience, learning, relationships with their peers and/or generally navigating everyday life situations. At the moment these booklets relate to ADHD and DCD specifically but they can be used for any child who struggles with these thinking difficulties and indeed we are currently working on booklets and videos that are tailored to all children who are neurodivergent.

Visual production credit: photographer monkeybusiness images via Getty images.

Update on EPIC activities

We have been a bit quiet on the EPIC blog of late as we have been very busy with a number of activities!

We are working hard on developing new booklets! These will be added to the collection of understanding ADHD and DCD and strategy booklets we have already posted on our website. Our new booklets will be suitable for all neurodivergent children. This means they will be suitable for children who have difficulties in their thinking, learning and wellbeing who have no diagnosis or multiple diagnoses or difficulties that go beyond a current diagnosis. Many children fall into these categories as waiting lists for assessments can be long and in our work we continually hear from parents and teachers about the need for information to help these children now while they are waiting on assessment and support.         

We have also recently received funding to make a video version for parents and teachers of the EPIC booklets highlighting the ways in which these children can be supported and we hope to release that on our website in late autumn.

From next week we will be posting a series of posts again for parents and teachers that describes recent research we have published about children’s understanding of ADHD and strategy use in the classroom, understanding the relationship between thinking processes and maths learning, and an overview of how ADHD stimulant medication works on thinking processes.  

From next week we will also be posting two interlinked series of blogs that relate to the importance of children with conditions, their families and those who care for them being involved as active decision makers in the process of research studies. These series’ will involve one directed to researchers ‘Insights from Researchers on Co-production blog series’ involving 4 blog posts written by PhD researcher Ailbhe McKinney on topics from evaluating involvement of the public in research to best practices in dissemination. A second series ‘Insights from a Lived experience on Co-production blog series’ involves 3 blog posts from Emma Pauley who has lived experience. She will cover the importance of families affected by disability in being at the heart of what is researched, informing how studies are carried out and how the researcher best reaches families with the findings.  We will also be launching our YouTube ‘EPIC’ channel with videos and presentations about research and advice for parents and teachers.

Myths around ADHD

Attention Deficit Hyperactivity Disorder (ADHD) is often misunderstood. The myths that surround ADHD never seem to go away despite a huge amount of research into the causes, characteristics and treatments for ADHD. Most psychological disorders do have myths around them though – such as the image of all autistic children having amazing memories like the actor in the film ‘Rainman’. The myths surrounding ADHD may be in part have arisen by the name we have for the disorder i.e. ‘attention deficit’, and the fact that people tend to see behaviour first. In this blog post some of these myths will be addressed. Looking at these myths in relation to research evidence is important as without an accurate understanding of the difficulties children with ADHD show, it is very difficult to support these children effectively.

A common myth is that most or even all children with ADHD will grow out of their difficulties. Some children do of course show reduced symptoms with development but research has shown that the story of developmental changes in ADHD is complex. In one research study, children were followed up after a 4 year period and asked to complete a set of thinking tasks tapping memory, planning, attention flexibility and controlling responses.  On some of the tasks, such as on a long-term memory task where children had to remember patterns and later recognise them, the children caught up with their peers. On another task where children had to use a strategy to keep and update information in their ‘working memory’ they showed improvements with age but didn’t catch up to the levels of their peers. On other tasks, such as those assessing being able to keep information in memory over time there was evidence of continued difficulties. This research shows that the story of ‘growing out of ADHD’ is not a straightforward one.

Some statements you may have come across about ADHD might include ‘ADHD mainly affects behaviour’, ‘ADHD is a childhood condition’, and ‘attention difficulties explain the thinking (‘inattentive’) part of ADHD’. In fact these are myths in the specific sense. While many children with ADHD do have behavioural difficulties, thinking and learning difficulties are very common and often underlie behavioural difficulties that are seen. Obviously the name ‘attention deficit’ suggests that difficulties in attention explains the thinking part but in reality this accounts for only a small part of the difficulties. Research has shown that many of these children do not have a specific attention difficulty at all – at least in terms of how psychologists measure attention.

Children with ADHD often show difficulties in thinking strategically – what we refer to as ’executive functions’. The thinking difficulties associated with ADHD are much broader than executive functions too though. Children with ADHD often show memory difficulties including basic memory processes and not just the more strategic kind of memory associated with executive functions. Other difficulties or differences can include perception of time (and a range of aspects of timing), being able to self-regulate, having an aversion to delay, and being variable in responding.  

An important issue to emphasise is that children with ADHD differ from one another. We now know that many children with ADHD show difficulties in executive functions for example but not all do, and those that do can differ in the areas they have difficulty in. Some may have difficulties in ‘working memory’ (a mental workspace where we hold and organise information in our mind) and others with planning. Other children may have a difficulty in using their attention flexibly and/or being able to control their responses. Children with ADHD have different strengths and difficulties and it is important we understand these children on an individual basis for that reason. In our ‘Understanding ADHD’ booklet, we describe a range of these strengths and difficulties and in our linked Strategy booklet we outline ideas for how to support children with their particular set of difficulties.   

ADHD is often spoken about as a condition that occurs on its own. Most children with ADHD show difficulties in other areas. Often these will relate to a second or even third diagnosed condition but children with ADHD often show symptoms of another condition but do not meet criteria for a diagnosis. These symptoms may still impact their thinking, learning, behaviour and wellbeing though. These difficulties may include the sensory difficulties we would associate with autism, or fine or gross motor difficulties we would associate with dyspraxia/DCD. Children with ADHD are also more likely than their peers to show specific learning difficulties such as dyslexia. Understanding these common co-occurrences is critical to fully support a child with ADHD.

A few years back members of our team were involved in a large scale research priority exercise (called a James Lind Alliance exercise) with young people, their families and health and education practitioners across a range of areas of learning difficulty including ADHD. Several of the top questions families and professionals felt were a top priority for research focused on how do we optimally support these children for best outcomes. A huge part of tackling this question involves the need to dispel these common myths and to understand children with ADHD based on research evidence. This research, which shows that ADHD is associated with a wide range of difficulties and that children differ from one another in their specific profile of difficulties, highlights the importance of taking an individualised approach to supporting children with ADHD.

Visual photo credit: Photographer valentinrussanov via Getty images.

Thinking skills and literacy in children with ADHD

We have recently published systematic reviews about thinking skills and their relationship to difficulties in maths and literacy in children with ADHD. Today we will summarise the findings of the review that focused on literacy. So first of all, what is a ‘systematic review’? A systematic review is a summary of all of the literature that has been published on a specific topic. The authors make decisions before hand about criteria that the research studies must meet such as for example that the review will include children in primary school only or who have a confirmed diagnosis. The authors then comprehensively search all of the available literature with those criteria and arrive at a final set of studies to be included. In our literacy review, we also did what is called a ‘meta-analysis’ – this involves doing a statistical analysis on the data produced by the studies in the review that combines them. Both a systematic review and a meta-analysis are therefore important ways of putting together and understanding a research area that draws on as much robust studies as possible. The conclusions made then reflect the studies across that field rather than a conclusion that comes from a single study result.

The review we are going to focus on today was on the topic of thinking skills and literacy. We chose to examine studies that focused on literacy broadly and not just reading as we know that young people with ADHD, their parents and teachers often make comments that difficulties lie beyond reading. This makes sense if you think about writing for example and the importance of planning in creating a story that has a beginning, middle and an end.

So what did our review and meta-analysis find? Using our criteria we ended up with a review that included 6 studies. The age of participants in the studies ranged from 6 to 16 years with an average age of 9. We found there was a fairly small set of studies conducted that met our criteria and had looked beyond reading to other aspects of literacy. Researchers mainly focused on ‘working memory’ (the mental workspace where you hold and organise information for a brief time), but some also looked at ‘inhibitory control’ (difficulty with avoiding distractors and generally controlling responses). Attention was also examined and several included measures of ‘processing speed’ (how long it takes to get something done). Surprisingly given our example above none of the studies had included a measurement of planning or broader organisation skills.

What did the review and analysis find then? We found a series of relationships between different aspects of literacy and thinking skills. Poorer working memory skills were linked to a wide range of aspects of literacy difficulties including word reading, reading comprehension (being able to understand what is being read), writing and spelling. What this means is that if a child has difficulties in working memory they are likely to need supports and strategies in place when doing tasks that involve literacy. Having difficulties in inhibitory control, which we know is a key characteristic of many children with ADHD, was related to poorer spelling. Attention was only examined in one study and was found to be associated with reading. Processing speed, or how long it takes to get something done, was not consistently linked to literacy, although may be relevant for writing. We concluded that much more research needs to be done on this important topic.

Understanding thinking difficulties and their relationship to literacy is really important in arriving at suitable supports and strategies for optimising literacy learning for children with ADHD. In our Strategy booklet we describe a range of techniques to encourage children to practice these thinking skills and strategies that can be used to help children engage optimally with their academic learning.

The full paper can be found here: https://bpspsychub.onlinelibrary.wiley.com/doi/epdf/10.1111/bjdp.12395

Visual production credit: photographer monkeybusiness images via Getty images.

Helping children with their thinking skills across settings

We have been blogging about EPIC over the last few weeks introducing the ideas behind our approach.  

Last time we blogged about two of the central foundations of EPIC –our approach being individualised and taking what is called a ‘transdiagnostic’ apporach. Today we are going to discuss the importance of embedding change across contexts.  

In order for activities to be most effective for children, it is best that they are carried out across the settings they spend time in. Using and practicing the strategies we have described in our Strategy booklet at home and at school can help to make them routine and a child’s go to.

An example is encouraging children to practice planning. Most children as they develop begin to naturally use methods to help them plan out tasks or activities. Some children with developmental difficulties forget to do this and it makes starting, staying on, and completing a task or activity difficult. In our ‘understanding’ booklets, we describe how parents and teachers caring for children with developmental difficulties can be aware of this thinking difficulty so they know they must encourage the child to put steps in place to help them complete tasks. They can also use external strategies like planners, diaries and mind-maps to help them think about and practice planning.

In the home, everyday toys like Lego and craft activities are excellent ways to promote planning. In our strategy booklet (e.g. page 38) we describe steps that can be taken to promote the use of planning like drawing out what you plan to make with Lego pieces and working out what pieces you will need before you start. Games like ‘Connect 4’ and ‘Guess Who’ can be used to remind children about the importance of planning by chatting through about how you plan your moves before you make them. Many craft activities are also useful. Children can be encouraged to think about the final goal, plan out their use of materials before starting, and break the tasks into steps or stages to help them stay on task and complete the goal. Baking, and cooking in general, with children is also an excellent way to model planning – ‘what are all the ingredients we need before we start?’. When we bake we can engage the child in breaking the task into steps and encourage them to work towards an end goal – the cupcakes coming out of the oven!

In school, there are many routine activities that lend themselves to planning. Doing a book or chapter review is a great way to encourage children to reflect and to break a story into parts.  Mind-maps are a visual way to organise thoughts and ideas. They have a focus in the middle with ideas or themes branching out from it. The branches can be used to represent relationships between ideas.  A mind-map can be used to plan out the writing of a story – in the middle could be ‘my story’ with the branches indicating ideas for the beginning, middle and end and of course this could be words or it could be pictures depending on the age and ability of the child.      

The knowledge and strategies children gain from these activities can upskill them in new scenarios they encounter where planning skills and aids can be beneficial. Although our posts are often especially useful for children with developmental difficulties these skills are important for all children and we encourage a whole class or family approach when using them at school or at home.

In the next few weeks, we are going to blog about research evidence on children with developmental difficulties starting with a piece on ‘myths around ADHD’ and then a post about stimulant medication and ADHD. Academics write about their research in journals that are often not accessible to the very people who would gain most from hearing about the research. Over the next few weeks we will blog about some of this research in a style that is suitable for all people. It is very important to us that parents, teachers and all those caring and working for children with developmental difficulties have information to hand that can help them understand a child’s condition or difficulties but also that helps them to offer opportunities and strategies for the children they care for.  

We hope you find our booklets useful. Do please contact us with any feedback you have! 

Visual credit: Image by photographer damircudic via Getty Images