Dr Lauren Powell is a researcher in the School of Education at the University of Sheffield. Her research covers various topics, including using co-design technologies to explore interventions to support children and young people with neuro-disabilities/neurodiverse young people.
Within a research team, she co-designed a psychoeducational tool (a paper-based resource) to support these young people, following a series of workshops. To read more about this research project and how it was implemented, more here (Powell, et al., 2020). The project then followed up with the children online to evaluate this prototype of the resource, more here (Powell, et al., 2021). To request a copy of the booklet, please fill out the following Google Form to receive a PDF version, or contact Dr Lauren Powell on l.a.powell@sheffield.ac.uk.
I was able to meet virtually with Dr Powell to discuss her research in more detail.
Dr Powell was initially motivated by exploring the ways in which children could be a part of designing an intervention that was for them. She had worked on a systematic review exploring current technologies intended to facilitate the self-management of challenges associated with ADHD in children and young people. Dr Powell explained that this research found that there wasn't an awful lot out there designed for the children themselves. This impacted on how those children would grow up to understand themselves and their diagnosis, both in terms of strategies to handle the symptoms they experienced but also their perception of themselves as a person, including their skills and capabilities.
Dr Powell went on to say, "There's this assumption that when children grow up if they've got a certain condition, they know how to manage it," but, as she explained, without sufficient education and support on how to do that, or even receiving a child-focused explanation of what ADHD involves and the impact it could have on them and their lives (positive and negative), this would be much more difficult.
Dr Powell and the research team set out to provide a resource that addressed the need for adults working with children and the children themselves to have a way of learning about ADHD and how to talk about it together. This was driven not only by a desire to involve children in this process, but also the belief that co-design would lead to the resources themselves being more effective, as it would involve the end users from the outset in shaping the focus.
Clinical teams who work closely with children with a diagnosis of ADHD and their families, such as ADHD nurse specialists, psychiatrists, psychologists, and speech and language therapists, were also a fundamental part of this process of design, to ensure that it was appropriate and relevant.
This resource is now being used across a number of NHS Trusts, schools, and charities in a variety of ways. For example, it can be used to support a child who has recently been diagnosed. Schools have been able to use it in class activities to support children to understand ADHD, as well as informing the work of SENDCOs who work in school settings (Special Educational Needs and Disabilities Coordinators). Charities use it in parent groups to support parents to understand ADHD, so they can then go home and use it with their children.
Ultimately, every CAMHS (Children and Adolescent Mental Health Services) works differently, so the resource can now be used in different ways in different contexts. This is a key aspect of the resource- it works best if it can be utilised in a way that works for those who need it.
The project team worked with the children, all of primary school age, at both co-design and evaluation- see Powell, et al., 2020, for the initial co-design, and Powell, et al., 2021 for the evaluation of the prototype. Using some of the same children throughout these stages presented some challenges and some benefits, as Dr Powell explained.
"It can be a strength because you develop rapport but also it can be a limitation because they know you, they like you and they might just tell you things that you want to hear,".
She stressed that, from her perspective, it was necessary for those in the research community carrying out co-design to be aware of bias and the benefit of 'fresh eyes', whilst also recognising the value in building that rapport and the relationships with children and parents, which was a process that took time. Dr Powell noted that the opportunity to carry out the initial co-design workshops face-to-face provided an opportunity for them as researchers to build relationships that recognised the needs of the children, and ensured that the experience of taking part in research could be a positive one. "They always have a nice time when they see us because we make sure that what we do is all child-centred," she explained.
When considering which children to include and how to address questions of inclusivity and diversity, the team was conscious that there is a gender imbalance in diagnosis of ADHD. Boys are more commonly diagnosed with ADHD compared to girls, and so this presents a challenge to attempts at representation across genders, but from the outset the purpose was not to limit who was able to take part in the research. Social deprivation index was also a factor which was recorded by the research team, due to evidence which suggests that young people are more likely to be from areas that are classed as more disadvantaged.
Another factor in their research was the effective use of different members of the research team. For example, during the online research they utilised the expertise of experienced graphics designer and co-author, Chris Redford, to create 'sketch notes', a practice of creating visual notes (Powell, et al., 2021). The team found that this visual representation of the discussion was really appreciated by the children and the parents.
In addition, Dr Powell found that a benefit of a co-researcher was the potential to limit unconscious bias. For example, when Dr Wheeler was leading the workshop, Dr Powell was able to observe, giving her a sense of distance and a chance to look from a different perspective.
The benefits of carrying out research face-to-face has been covered in terms of building rapport, but Dr Powell noted that online research has its own advantages, which was the format for the evaluation of the prototype (Powell, et al. 2021). For example, for the children, being able to be at home for this research gave an element of security and predictability. It also removes the requirement of travel time and expense.
Expanding this topic to the consideration of digital technology more widely, for example choosing a paper-based resource rather than a digital version, accessibility was a key consideration. Dr Powell pointed out that technology costs a lot more money, so although there are benefits to digital tools and the future of this research may indeed involve that, the priority was in this research that all who need the resource can access it. It is important to consider that if the end users do not have equitable access to digital technology they lose access to that resource.
She went on to say,
"The thing is, with paper based it's so cheap and one thing the NHS and schools don't have a lot of is money. It's cheap and free to use and easy to use and easy to access."
Dr Powell explained the importance of making a clear differentiation between stakeholders and end users when carrying out participatory research, with a focus on ensuring a fair representation, transparency and clear justification of why the project is involving those people.
It is also necessary to be consistent with the definitions of co-design that are used, to avoid interchangeability of definitions and dilution of the meaning (more on this in What is participatory research?). Sanders and Stampers (2008) is a guideline for Dr Powell's research paper, which she also used in her PhD.
Dr Powell is currently working on a similar project, conducting workshops with young autistic people in collaboration with NIHR Children and Young People MedTech, the University of Derby, Sheffield Hallam University and an independent graphic designer.
Powell, Lauren (2020) The design and evaluation of technology to self-manage long-term neurodisabilities across the lifespan. PhD thesis, University of Sheffield.
Powell, LA., Parker, J., & Harpin, V., (2017) What is the level of evidence for the use of currently available technologies in facilitating the self-management of difficulties associated with ADHD in children and young people? A systematic review. European Child & Adolescent Psychiatry.
Powell, L., Parker, J., & Harpin, V. (2017). ADHD: Is There an App for That? A Suitability Assessment of Apps for the Parents of Children and Young People With ADHD. JMIR mHealth and uHealth, 5(10). DOI: 10.2196/mhealth.7371
Powell, L., Parker, J., Harpin, V., & Mawson, S. (2019) Guideline development for technological interventions for children and young people to self-manage ADHD: A realist evaluation. Journal of Medical Internet Research, 21 (4). e12831. ISSN 1439-4456
Powell, L., Wheeler, G., & Parker, J. (2020). Proceedings of the 6th International Conference on Design4Health, Amsterdam 2020, Editors: Kirsty Christer, Claire Craig & Paul Chamberlain, Volume 3. The Co-Design Of A Psychoeducational Tool For Children And Young People With ADHD. https://www.researchgate.net/profile/Jack-Parker-3/publication/342084327_The_co-design_of_a_psychoeducational_tool_for_children_and_young_people_with_ADHD/links/614c8026a3df59440ba5458a/The-co-design-of-a-psychoeducational-tool-for-children-and-young-people-with-ADHD.pdf#page=82.
Powell, L., Wheeler, G., Redford, C., & Parker, J. (2021) The suitability and acceptability of a co-designed prototype psychoeducational activity book for seven- to eleven-year-olds with ADHD, Design for Health, 5:1, 4-25, DOI: 10.1080/24735132.2021.1928380
Sanders, E. B.-N. & Stappers, P. J. 2008. Co-creation and the new landscapes of design. Co-design, 4, 5-18.