Involving the participant group in the design of research studies

Whether attempting to validate a known theory or making modifications to an existing study, there are a range of influences on academics when planning their research.

However, one approach that I have found to be particularly informative is involving the participant group in the design of the study itself.

In my case, this involves children (and their families) with developmental disorders, and this approach has often helped me to identify issues which have ultimately proven to be extremely important to my research.

One example of this comes from a recently completed study examining the pedestrian skills of children with Attention Deficit Hyperactivity Disorder (ADHD) and the associated cognitive factors which may help explain their vulnerability at the roadside.

Research on road accidents

Road accidents are recognised as a leading cause of accidental death for children and young people, and children with ADHD are much more likely to be involved in accidents compared to others.

Surprisingly however, it is only recently that researchers have begun to explore this, which meant that, when we began planning our project in 2012, only two other research projects had studied the pedestrian behaviour of children with ADHD.

Although one of these studies (Stavrinos et al., 2011) suggested that difficulties with executive functions may explain why these children have more road accidents, it was still not understood which specific aspects of the thinking process contributed directly to this increased risk, so our aim was to attempt to identify the specific executive functions which may help to explain the vulnerability of children with ADHD at the roadside.

We also decided to examine delayed short-term memory, as our previous research had shown that the ability to hold information in the mind over time is critically important in children with ADHD, and previously we had shown that performance in delayed short-term memory was associated with the greatest effect size compared to healthy controls (Rhodes et al., 2004, 2005), and was the strongest predictor of clinical change with medication (Coghill et al., 2007; Rhodes et al., 2004, 2006).

(A longitudinal follow-up study of our participants - Coghill et al. 2014 - would go on to find that improvements in short-term delayed memory was the only aspect of cognitive functioning that was associated with a reduction in ADHD symptoms over a 4-year period)

Our initial study

Our initial study included 122 children, aged 5 to 12, from Scottish NHS Health Boards (Trusts) and local education authorities. Sixty-one were children with ADHD, who were then matched to children without ADHD on a range of factors (incl. age, gender, socio-economic background and general ability).

However, we also decided to supplement our approach by visiting ADHD parent support groups to talk about the impending project, hoping to glean some additional insights directly from the parents of children with the disorder.

This proved very fruitful, with several parents mentioning that their children frequently seemed to have difficulty working out other people's intentions, in a way which sounded very similar to the academic focus on 'theory of mind' (the ability to attribute mental states to yourself and others and to understand that others have beliefs, intentions, and perspectives that are different from your own).

While there is some research in this area with children with ADHD, so far it hasn't been a huge focus of the literature. So, in response to this parental insight, we decided to incorporate measures of children's ability to make predictions about what other road users intended to do into our study, while also drawing on prior research conducted with typically developing children (Foot et al., 2006).

During the study

During the study, the children viewed short video clips of moving vehicles, pedestrians and cyclists.  The clips were then paused and the children were asked what they thought would happen next based on what they had seen (e.g. a car indicating to leave the road at a junction).

We found that children with ADHD made significantly fewer correct predictions and, when asked, were much less likely to recall clues from the clips which could have allowed them to make correct predictions (e.g., a vehicle's indicators, brake lights or changing traffic lights), suggesting that difficulties with how the children organised their memories (working memory) interfered with their ability to make accurate predictions,

We also examined other areas of pedestrian behaviour which young children, in general, have difficulties with, including their ability to plan a safe route across the road (an ability which has been shown to improve significantly between the ages of 5 and 12, but which has not previously been examined in an ADHD group), and found that children with ADHD were much less able to identify a safe place to cross and, unlike their peers, did not alter their crossing routes to avoid hazards, so more often crossed near blind corners and between parked cars which obscured their view of the road.

When they were asked to justify their selected routes they were also much less able to do so than the children without ADHD.

The bottom line

The bottom line here is twofold.

Firstly, children with ADHD face considerable difficulties when crossing the road and, although a number of cognitive factors may be responsible for this, our research found that difficulties with being able to hold information in short-term memory over a delay were closely linked to the difficulties these children had in remembering features, particularly potential hazards, of the road scene and being able to plan accordingly.

Secondly, speaking directly with the parents encouraged us to consider the question of whether children with ADHD were able to accurately judge the intentions of others or not, and our findings in this area turned out to be very important to our understanding of the problem!

As this case so aptly demonstrates, involving the participant group in this manner has the potential to make a real contribution to how we formulate our research, by providing us with an extra layer of insight which could not have been gleaned from the previous literature, and I believe this approach could potentially be adopted much more broadly in the context of studies of ageing, development, or any other targeted participant group.

About the author

Dr Sinead Rhodes is a Senior Research Fellow at the Centre for Clinical Brain Sciences, University of Edinburgh, where she specialises in Cognitive Psychology.

Her research interests are focused on issues of memory, psychiatric disorders, and neurodevelopmental conditions (particularly their prediction and symptoms).

Dr. Rhodes also works closely with the Royal Society of Edinburgh Young Academy and is the founder and co-chair of the Research The Headlines project.