NDAS22- Through the eyes of a Parent Carer

I was invited to speak at Edinburgh University at the Neurodevelopmental Disorders Annual Seminar (NDAS22) conference. The conference was wonderful. From start to finish, I was included and made to feel welcome. There was warmth in the room and a buzz of excitement. One of the things that really struck me about the day was how considerate the researchers in the room were and how they were keen to do right by their participants. 

I can see solutions for many of the issues we face and yet system deliveries often cut people with lived experience (like me) out of the conversation at the initial stage. This got me thinking, wouldn’t it be wonderful to normalize a grass roots approach to the culture of co-production in research? A system whereby people who know how, meet the minds of the people equipped to make it happen? A mutually beneficial exchange of knowledge resources.

When it was my turn to speak, I spoke about my experiences of co- production in the wider sense and then focused on two research case studies I had been involved in and how they made me feel; Genuine vs tokenistic co-production. I explained how co-production is a values-based approach. It is about creating a meaningful environment where everyone feels heard and valued. My role on the day was to offer insights as a parent carer representative. I was there as someone sitting on the other side of the research fence, offering a different viewpoint for consideration. But I also felt like I was a fly on the wall, peeping through a half-closed door. I was getting to see how the world of research worked from the inside. I left the conference feeling energized and inspired because I had learned a lot and this knowledge would be useful for my family. When I spoke, I felt heard. I know that my contribution to the day would have helped others reflect on their practice. It gave me hope and I found comfort in seeing firsthand the passion from people in the field, excitedly talking about their work and keen to fulfil their role to the best of their ability.

Next week, I will be posting a blog about being involved in tokenistic co-production research versus genuine co-production research and how they each made me feel. 

Guidelines for recruitment and conducting co-production with neurodivergent children and adults

Blog 4 of 4 in the Insights From Researchers on Co-production blog series

EPIC blogs usually focus on parent, teacher and clinician audiences. This series of blogs are the findings from a workshop for researchers entitled Overcoming barriers to co-production with children and adults with neurodevelopmental disabilities which took place during the Neurodevelopmental Disorders Annual Seminar 2022 held in Edinburgh. Following on from this series we will have the Insights from a Lived experience on Co-production blog series which will focus on getting involved in decision making about research from a parent perspective – Starting next week!

Inclusive Practices for Neurodevelopmental Research (Fletcher-Watson et al. 2021), The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants (2019) and Starter Pack: Participatory Autism Research (2017) are excellent starting points for planning a co-produced project with people with neurodevelopmental conditions like autism, ADHD, dyspraxia, dyslexia, developmental language disorder or Tourette’s syndrome. These three resources give clear practical guidelines about transparency around partnership goals, defining roles, setting expectations, recruitment (who to recruit and how), accessibility, building and maintaining trust, understanding intersectionality, and payment. A barrier to co-production is that often the funding is awarded after the idea has been developed and submitted for a funding call. Solutions to this problem include: 1) using alternative funding (funding left over from other projects, small public engagement grants) 2) establishing a department or research group specific advisory group to help with the development of projects, opposed to a project-specific group. 

If the research is about children, a combination of neurodivergent children and adults is advised to co-produce the project (Fletcher-Watson et., 2021). For example, in our recent blog, Dr Rhodes explains how including the insights from children with ADHD improved the design of an intervention. Adults will have the hindsight, self-advocacy skills, language and understanding to identify research priorities. However, contributions from children or adolescents is recommended because a) they will be able to inform the practical side of the project (e.g. designing a feasible study) and, b) may also have perspectives on themes the adults do not have experience of (e.g. about social media, school during the pandemic).  The interesting thing about doing co-production with children is that they may say the relevant piece of feedback at any moment. For example, the researcher might ask at the start of a group activity “what needs to change in your school?”. It may be half an hour later a child says “bullying is so bad in my school”. The researcher must be engaged and alert to record moments like this one. 

Interviews and group workshops with children might work but more likely activities like writing, drawing, role-playing, puppets, describing pictures, taking pictures may work better depending on the age of the children. Questions may need to be adapted from “what would you like to see researched” to “if you were the principal in your school, what would you do?” Children may feel like they’ll get in trouble for criticising their school or services. Asking children to give feedback as a group somewhat addresses this issue. Providing a training day can improve children and adolescents confidence around raising problems. In addition, a training session/day can serve as an ice-breaker and allow a child build relationships with the research team and other children there. The structure of the co-production should also acknowledge the parents and in some cases the parents can facilitate the co-production; however it is important the parent does not speak for the child (even if they do not mean to). It is nice to recognise children’s contribution by giving them a certificate. 

As is the case with research more generally, people with intellectual disabilities (ID) are often excluded from co-production and participatory research. Perhaps co-production with people with ID may be more difficult, but that is not a reason not to do it. A culture shift needs to happen with researchers towards believing adults with ID can be collaborators/members of PPI groups. Di Lorito and colleagues (2018) conducted a systematic review of ‘co-research’ with adults with Intellectual disability and describe the barriers and facilitators. They mention the following facilitators: 1. Recruiting individuals who are motivated and interested (simply being a person with an ID does not mean they are suited to the role), 2. Formal/informal training of skills or learning about research  3. Defining the roles of the researcher, the person with ID and the support worker and being flexible with the roles changing at different stages of the project, 4. Being aware of practical challenges like finding an accessible location, time, informing carers 5. Developing strategies for communicating complex themes e.g. visual aids, breaking down complex tasks into multiple steps, offering one-to-one interviews 6. Good relationships with services. Another paper (Schwartz et al., 2020) describes contextual factors which facilitate co-production with people with ID like a research team with a genuine commitment to including the views of people with ID. Photovoice has recently been used for research with children (Khawam et al., 2022) and adults with neurodevelopmental conditions and intellectual disabilities and can also be used as a tool to support co-production and participatory research methods (Williamson et al., 2020). 

There is a variety of ways you can recruit people to join a co-production group: a) connecting through social media, possibly someone you have built a social media relationship with or someone whose posts are in line with the approach of the team, b) explicitly advertising on social media, c) partnering with charities, organisations or advocacy groups who are more often interested in being involved in the development of research d) emailing a known neurodivergent researcher/advocate who may want to get involved in research e) tagging an advertisement onto a science communication event e.g. public webinar for teachers or parents; see here for our previous blog on what makes teachers want to get involved in research.

When deciding who to recruit for co-production a mixture of community members and individuals with specific expertise is recommended (Nicolaidis et al., 2019). It is important to realise that the co-production group is not the same as the participant group (who will later take part in the research); and does not need to be ‘representative’ of the population in the same way a participant group would need to be. It is appropriate to recruit someone who has specialised skills or expertise in research, advocacy, and/or working in charities, organisations, or services (e.g. look at our advisory group for EPIC. After all, when recruiting for a research team, you look for researchers with particular skills not just any researcher.  

References and more resources: 

https://www.autistica.org.uk/our-research/research-toolkit

Ashworth, M., Crane, L., Steward, R., Bovis, M., & Pellicano, E. (2021). Toward empathetic autism research: Developing an autism-specific research passport. Autism in Adulthood, 3(3), 280-288. could also be used for involvement and co-production.

Fletcher-Watson, S., Brook, K., Hallett, S., Murray, F., & Crompton, C. J. (2021). Inclusive Practices for Neurodevelopmental Research. Current Developmental Disorders Reports, 1-10. 

Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., … & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019. 

Schwartz, A. E., Kramer, J. M., Cohn, E. S., & McDonald, K. E. (2020). “That felt like real engagement”: Fostering and maintaining inclusive research collaborations with individuals with intellectual disability. Qualitative health research, 30(2), 236-249. 

 Di Lorito, C., Bosco, A., Birt, L., & Hassiotis, A. (2018). Co‐research with adults with intellectual disability: A systematic review. Journal of Applied Research in Intellectual Disabilities31(5), 669-686.

Williamson, H. J., van Heumen, L., & Schwartz, A. E. (2020). Photovoice with individuals with intellectual and/or developmental disabilities: Lessons learned from inclusive research efforts. Collaborations: A Journal of Community-Based Research and Practice, 3(1).

Khawam, G., Christie, H., McConachie, D., Goodall, K., Van Herwegen, J., Gallagher- Mitchell, T., Ballantyne, C., Richards, C., Moss, J., Crawford, H., Outhwaite, L.& Gillespie Smith, K. (2022).Road to recovery: Understanding the impact of COVID and recovery phases on children and young people with Intellectual Disabilities and their families. Open Science Framework. https://osf.io/e3yzj

Davison, J., Maguire, S., McLaughlin, M., & Simms, V. (2022). Involving adolescents with intellectual disability in the adaptation of self‐reported subjective well‐being measures: participatory research and methodological considerations. Journal of Intellectual Disability Research.

http://triumph.sphsu.gla.ac.uk/about-us/

syp.org.uk

This workshop was funded by the University of Edinburgh College of Medicine and Veterinary Medicine Public Engagement Seed Fund through the Institutional Strategic Support Fund

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.

Science Communication and Public Engagement for Research about Neurodiversity and Disabilities

Blog 3 of 4 in the Insights From Researchers on Co-production blog series

EPIC blogs usually focus on parent, teacher and clinician audiences. This series of blogs are the findings from a workshop for researchers entitled Overcoming barriers to co-production with children and adults with neurodevelopmental disabilities which took place during the Neurodevelopmental Disorders Annual Seminar 2022 held in Edinburgh. Following on from this series we will have the Insights from a Lived experience on Co-production blog series which will focus on getting involved in decision making about research from a parent perspective.

Dissemination of research findings is about sharing the results with people who the research is relevant to (neurodivergent/disabled people, families/carers, policy makers, clinicians, educators, other researchers, people who are interested and the wider public). This can take many forms; public talks, websites, blog posts, podcasts, YouTube videos, social media, science festival events, art shows, television/radio appearances, comic book stories, animated videos, infographics, museum exhibitions, school outreach, or events at zoos, shopping centres, or parks.

The research team should think strategically about how best to disseminate their findings and what are their aims are and what is the potential impact they hope to have. Developing a Public Engagement Strategy for a project, research group, or department can be helpful in clarifying the aims, context, risks, and plan of action (NCCPE, 2017).  Often researchers think the purpose of science communication is to inform the public about research findings or create better understanding. However, there are many other benefits; reducing stigma, creating a sense of community, improving self-esteem, shifting culture, providing information that is comforting, creating hope, inspiring young people to work in research, and changing attitudes and behaviour. There are benefits to the research team as well such as i) having an opportunity to hear people’s feedback and concerns, ii) improving the reputation or increasing the visibility of the research team leading to more recruitment (both for co-production or research studies), iii) opportunity to establish and maintain connections (add names to a mailing list, social media connections). Developing a strategy can also highlight the necessary context for the aims to be met: support from university engagement officers, public engagement grants, perhaps making part of a research assistant/post-doc’s job description to manage the public engagement, training requirements/courses available, and working with your University’s overarching public engagement strategy. A logic model (NCCPE, 2017) can be used to evaluate the short-term outcomes and long-term impact. The evaluation can be characterised as a reflective and iterative process where the public engagement strategy is evaluated each year and updated accordingly. Guidelines from den Houting (2021) has two templates for how you might start to develop a plan for a science communication event.

The science communication or public engagement event can also be co-created with the target audience (e.g. neurodivergent people, teachers, parents). Their contribution will ensure the findings are accessible and that the message of the science communication is what the researchers intended to say and sensitive to the community. Neurodivergent artists or graphic designers can help with the design of output materials or make a brand logo for the research group. For example Emma Ferrier made the logo for my PhD study and the logo for EPIC (see below) . See her website here https://www.emmanovella.co.uk

Positioning an event within larger events or initiative is another way to reach more people e.g. organising events around Autism Acceptance month. High quality science communication should always aim to place the new findings within the context of previous research/future research plans and within the context of the individual’s everyday life. For example, if a researcher is sharing findings about a recent project looking at sensory experiences, the science communication should highlight how the findings may be affecting autistic people’s daily experiences. See below for some creative examples of public engagement work in the area of neurodiversity, disabilities, and mental health. 

References and more resources: 

Reed, M. S., Duncan, S., Manners, P., Pound, D., Armitage, L., Frewer, L. J., … & Frost, B. (2018). A common standard for the evaluation of public engagement with research. Research for All. DOI: 10.18546/RFA.02.1.13. <- excellent paper, one of my favourites. Includes a structure for evaluating public engagement and creative ways to collect the feedback

Helpful website with training and more resources: https://www.fasttrackimpact.com

den Houting, J. (2021). Participatory and Inclusive Autism Research Practice Guides. Brisbane. Autism CRC.https://www.autismcrc.com.au/access/sites/default/files/resources/Participatory_and_Inclusive_Autism_Research_Practice_Guides.pdf

National Co-ordinating Centre for Public Engagement (2017) ‘Developing a public engagement strategy’ ‘guide Available at https://www.publicengagement.ac.uk/sites/default/files/publication/developing_a_public_engagement_strategy.pdf

National Co-ordinating Centre for Public Engagement (2017) How to evaluate your public engagement support programme Available at https://www.publicengagement.ac.uk/sites/default/files/publication/evaluating_your_support_programme.pdf

Good practices for science communication on social media https://questproject.eu/recommendations-for-science-communication-on-social-media/

The Scotland Policy and Research Exchange website has guidance on how to work with policy makers https://spre.scot

https://www.parliament.scot/chamber-and-committees/research-prepared-for-parliament/about-research

Seven principles for public engagement in science and innovation policymaking. A guide from Nesta’s Inclusive Innovation team https://media.nesta.org.uk/documents/Seven_principles_HlLwdow.pdf

Creative examples of public engagement work for research on mental health and disabilities 

https://www.ucl.ac.uk/ioe/news/2017/jun/toolkit-released-bust-stigmas-about-autism

https://blogs.exeter.ac.uk/exploringdiagnosis/about-us/public-engagement-strategy/

https://www.publicengagement.ac.uk/do-engagement/inspire-me/case-studies

https://braininstitute.ca/resources/pond-youth-digital-stories

https://www.comorment.uio.no/press-and-outreach/science-festival-activities/risk-and-resilience.html


This workshop was funded by the University of Edinburgh College of Medicine and Veterinary Medicine Public Engagement Seed Fund through the Institutional Strategic Support Fund.

Better not do it at all, than do co-production badly: Trust, Expectations & Payment

Blog 2 of 4 in the Insights From Researchers on Co-production blog series

EPIC blogs usually focus on parent, teacher and clinician audiences. This series of blogs are the findings from a workshop for researchers entitled Overcoming barriers to co-production with children and adults with neurodevelopmental disabilities which took place during the Neurodevelopmental Disorders Annual Seminar 2022 held in Edinburgh. Following on from this series we will have the Insights from a Lived experience on Co-production blog series which will focus on getting involved in decision making about research from a parent perspective. 

Disabled and neurodivergent people have historically been excluded from the decision-making process about research about them. For this reason, it is important the research team take trust and transparency very seriously. It is important for the researcher to be transparent about which decisions have already been made and restrictions imposed by funding, research design, or time. If trust is lost, members may drop out, not take part in future involvement work or discourage other people from involvement. In this way, tokenistic involvement is damaging and makes the wedge between the community and researchers bigger. Furthermore, as Emma Pauley (invited speaker at the workshop, lived experience with co-production) pointed out, it can also negatively affect the self-esteem and mental well-being of members of the community who give up their time to take part in co-production, only to realise at a later point, none of their feedback has been taken on board. 

Setting expectations about the co-production work is key to developing good working relationships. Before agreeing to take part, the co-production group should know what is expected of them, the time commitment, and how much they’ll be paid. Bagley and colleagues (2016) provide an example of a Terms of Reference document which could be used to lay out expectations. I think for a larger scale project perhaps using a document like this could be sensible, however for a small scale project, when paper work could be off putting for people with neurodevelopmental conditions, simply setting expectations verbally and/or by email may be more appropriate. Whichever way you decide to set expectations, being clear about how much power the co-production group will have is crucial. Phrases like “consultation”, “genuine co-production”, “equal partnership” “participatory research” are often used to describe different levels of power (although it seems people often mean slightly different things when they use these terms and terms have different connotations). It is important to explain what you mean by these terms when having meeting with the your research team, the co-production group, and when setting out expectations. 

Describing your positionality when first meeting your co-production group can be helpful in creating trust. For example, explaining what your background is, if you are neurotypical/neurodivergent/disabled, explaining how the idea for the project developed, where you are in your career, and/or how you came to be interested in this work. When recruiting a new co-production group, it can be useful to share a document, or website explaining the research team’s recent work or previous collaboration work (Fletcher-Watson et al., 2021).  

Payment also relates to trust as fair payment communicates respect. In some cases, a co-researcher may want authorship instead or certain groups might need their travel paid for in advance. For this reason, a conversation at the start about payment should happen. The NIHR website below has guidelines on payment rates and what to do if they are in receipt of state benefits, job seeker allowance, or carer’s allowance to avoid reduction. 

Researchers will make mistakes. But what’s important is owning up to the mistakes and apologising. Nicolaidis and colleagues (2019) point out for trust to build and be maintained there must be a willingness to learn and forgive. 

References and more resources: 

Bagley, H. J., Short, H., Harman, N. L., Hickey, H. R., Gamble, C. L., Woolfall, K., Young, B., & Williamson, P. R. (2016). A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress. Research involvement and engagement2, 15. https://doi.org/10.1186/s40900-016-0029-8 <- excellent resource for thinking about patient and public involvement for a trial 

Fletcher-Watson, S., Brook, K., Hallett, S., Murray, F., & Crompton, C. J. (2021). Inclusive Practices for Neurodevelopmental Research. Current Developmental Disorders Reports, 1-10. 

Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., … & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019.

Recently updated payment guidelines:

https://www.nihr.ac.uk/documents/Payment-for-Public-Involvement-in-Health-and-Care-Research-A-guide-for-organisations-on-determining-the-most-appropriate-payment-approach/30838

This workshop was funded by the University of Edinburgh College of Medicine and Veterinary Medicine Public Engagement Seed Fund through the Institutional Strategic Support Fund.

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. 

Evaluation of co-production 

Blog 1 of 4 in the Insights From Researchers on Co-production blog series

EPIC blogs usually focus on parent, teacher and clinician readers. This series of blogs are the findings from a workshop for researchers entitled Overcoming barriers to co-production with children and adults with neurodevelopmental disabilities which took place during the Neurodevelopmental Disorders Annual Seminar 2022 held in Edinburgh. Following on from this series we will have the Insights from a Lived experience on Co-production blog series which will focus on getting involved in decision making about research from a parent perspective.

During the workshop, we split into groups to work on challenges associated with co-production. Attendees self-selected to one of six groups: 1) Recruitment and Partnership building, 2) Payment, Expectations, and Trust, 3) Facilitation of co-production with adults, 4) Facilitation of co-production with children and adolescents, 5) Evaluation or 6) Dissemination and public engagement. 

No one went to the Evaluation group. And so, I decided to write this blog first as there is seemingly a lack of confidence in this area with researchers. The other reason Evaluation is the first entry in this blog series, is because evaluation is something you need to think about at the beginning. 

Evaluation of co-production can be thought of in two parts: evaluating the process of co-production and evaluating the impact of the co-production on the project. Evaluating the process can be formative and summative (den Houting, 2021). Formative evaluation is evaluating the design for a given purpose and context. Collecting this formative feedback could take the form of for example, 1) checking with your project patient and public involvement co-ordinator if the structure of the workshop you’ve designed makes sense or if the questions are clear, 2) checking the activity with 1 or 2 children before doing it with ten, 3) asking a colleague who has conducted similar work if they think the design will work well. If co-production for a project is long-term e.g. over a year, formative evaluation could be collecting feedback from your  group about how the co-production process could be improved e.g. shorter meetings, sending the agenda in advance, switching to texting instead of email for communication. Recording who came to a meeting, their ages, diagnoses, ethnicities, or other relevant information like membership in charities/organisations or research experience is important for reflecting on whether other people may need to be recruited. It can be helpful if an indicator of understanding amongst the group is collected e.g. asking members to summarise the main points of the day at the end of a workshop – this point is more relevant to working with children. 

Summative evaluation of the co-production process is important as it holds the researchers accountable and provides impetus for the research team to reflect and change their processes for the next project. This can involve asking the co-production and the research team about how the co-production went. den Houting (2021) provides some examples of questionnaires and interview questions to evaluate the process of co-production. 

Finally, recording the impact of the co-production on the project. Evaluating impact of the co-production on the project can be supported by a framework like the Public Involvement Impact Assessment Framework (PiiAF) (Popay & Collins, 2017). The framework can also be used as a means of setting expectations with the co-production group at the start. When co-production is carried out well it is embedded in the research design process and gradual; it can be tricky to look back and remember exactly what the co-production group contributed to the project. The researcher might think a year later “was adding the a measure of well-being to the project my idea or their idea? Or did it arise in a discussion we had…I think it was my idea…but I think I had that idea as a result of something the co-production group said..oh I can’t remember!”. Developing a plan at the beginning of co-production to record the feedback avoids this problem. This can take the form of recording notes during each meeting and then under the notes writing a reflective piece about which parts will inform the project. When it is time to write your paper, you will be able to succinctly write how involvement impacted the project. Do not forget to record praise for the project as well. 

Patient and public involvement is a part of the research process like funding, design, data collection, analysis. I agree with Edelman and Barron (2016) when they say patient and public involvement (PPI) should not be evaluated like a sort of complex intervention on the project. They make the interesting point that PPI is a ‘contribution of expertise and advocacy, equitable to the contribution of clinicians, statisticians or others.’ Would you test the contribution of a statistician on a project? With the help of a framework like the PiiAF, thinking about the aims, desired outcomes, and indicators of those outcomes is useful for 1) designing the structure of your co-production work (how many sessions will be needed, what we need to cover in them), 2) setting expectations for the co-production group and the rest of the research team, and 3) looking ahead to decide how you will record feedback and how it informs the project. But testing co-production, like you would other variables in your research project, is not necessary in most cases. 

References and more resources: 

Popay, J., Collins, M., & with the PiiAF Study Group. (2014). The public involvement impact assessment framework guidance. Universities of Lancaster, Liverpool and Exeter https://piiaf.org.uk (full and short version available)

Collins, M., Long, R., Page, A., Popay, J., & Lobban, F. (2018). Using the Public Involvement Impact Assessment Framework to assess the impact of public involvement in a mental health research context: A reflective case study. Health expectations : an international journal of public participation in health care and health policy, 21(6), 950–963. https://doi.org/10.1111/hex.12688

den Houting, J. (2021). Participatory and Inclusive Autism Research Practice Guides. Brisbane. AutismCRC.https://www.autismcrc.com.au/access/sites/default/files/resources/Participatory_and_Inclusive_Autism_Research_Practice_Guides.pdf

Edelman, N., & Barron, D. (2016). Evaluation of public involvement in research: time for a major re-think?. Journal of health services research & policy, 21(3), 209–211. https://doi.org/10.1177/1355819615612510&nbsp;

This workshop was funded by the University of Edinburgh College of Medicine and Veterinary Medicine Public Engagement Seed Fund through the Institutional Strategic Support Fund.

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.

Outputs from our co-production workshop

The Neurodevelopmental Disorders Annual Seminar was held in Edinburgh this year. During the event, we held a workshop called Overcoming barriers to co-production with children and adults with neurodevelopmental disabilities.

Many researchers feel unprepared to co-produce research with people with neurodevelopmental disabilities, while still believing in the value of co-production. This workshop aimed to address this gap, by giving researchers an overview of the main challenges to co-production and how to overcome them.

We had three excellent speakers:

Dr Laura Crane, co-director of Centre for Research in Autism and Education (CRAE) at University College London. In her talk, she explained her journey into participatory research methods, how research about autistic people has changed in the last few years, challenges and solutions to co-production work.

You can see her presentation on our YouTube channel here https://www.youtube.com/watch?v=qMSrhVBn4sk&t=27s

Ailbhe Mckinney talking and Sarah O’Brien on the big screen giving her views during the discussion part of the workshop

Next, we had Sarah O’Brien, a PhD researcher at Kings College London. She talked about co-production from the perspective of conducting it as a facilitator but also being involved as an autistic and dyspraxic individual. She talks about what she learnt along the way. 

See her talk here: https://www.youtube.com/watch?v=ZaBizLjR0rI&t=346s

Finally, we had Emma Pauley, who is a parent and co-production advocate. She talked about being involved in genuine co-production and then, tokenistic co-production. She spoke about how it was easy for her to see the difference and how they made her feel. 

In the afternoon of the workshop, attendees (45 researchers in the area of neurodevelopmental conditions) discussed challenges and solutions to co-production across six themes: 1) Recruitment and Partnership building, 2) Payment, Expectations, and Trust, 3) Facilitation of co-production with adults, 4) Facilitation of co-production with children and adolescents, 5) Evaluation or 6) Dissemination and public engagement. 

Over July and August we will be posting two blog series summarising the outputs from this workshop: starting this week with the: ‘Insights from Researchers on Co-production blog series. and then, later in the summer Emma Pauley’s series ‘Insights from a Lived experience on Co-production blog series’

This workshop was funded by the University of Edinburgh College of Medicine and Veterinary Medicine Public Engagement Seed Fund through the Institutional Strategic Support Fund.