Down Syndrome Research Forum, 16th-17th Sep 2019, UCL

Katie Gilligan and Ashley Williams from the CoGDev lab attended this year’s Down Syndrome Research Forum. Ashley’s brilliant blog below highlights the take home messages from the event. 

Overview of Forum
The 2019 Down Syndrome Research Forum was hosted at UCL by Dr. Jo Van Herwegen and Prof. Sue Buckley. The event was an excellent opportunity to share recent developments in Down syndrome research with not only other researchers, but with practitioners and parents too. This forum allowed for the dissemination of preliminary results as well as feedback from a variety of perspectives that will shape research on Down syndrome in the coming years. Across the two days, a variety of topics were presented including: school age, number, health, co-morbidity, employment, and speech and language. To conclude, all guests we able to engage in a discussion that allowed for further feedback to the presenters as well as an exploration of the future of research in Down syndrome and what this may look like.

There were several key highlights of the forum: the exciting interventions being discussed, the focus on parental experience and its effect on children’s attainment, and the optimism present throughout regarding children’s attainment and life outcomes.
One such highlight was the Mediated Learning Intervention (MLI) presented by Dr. Vesna Stojanovik. MLI is not an intervention for one specific element of learning, but rather an approach to many types of learning, with mediators asking questions which help children uncover how they approach something, or how they are learning. There was a significant increase in children’s planning ability after the intervention. Future research suggestions were to explore when or if the benefits of the intervention will plateau. Another promising intervention presented by Vesna, was the Early Social Communication Intervention, which involves parents of children with Down syndrome directing their child’s attention to objects in stages, e.g., starting with placing the child’s hand on the object and working up to pointing at and naming objects. The intervention showed good results with a second phase now being planned to assess the feasibility of rolling the intervention out within the NHS.

Another interesting topic was on the Home Numeracy Environment of children with Down syndrome, presented by Erica Ranzato. Her web-based survey of parents who have a child with Down syndrome aged 4-11, asked about their engagement in 42 activities relating to: counting, calculation, functional maths, literacy, everyday activities not relating to maths and everyday general maths. Findings show that on average parents reported their child’s literacy ability as being in-line with their other abilities, whilst they reported that their child’s maths ability fell below their other abilities. The study also found that parents engaged their child in literacy activities daily, however they did not do this with maths, with parents reporting the belief that literacy attainment is more important than some elements of maths attainment.

Rebecca Baxter presented her findings regarding the nature of speech difficulties in children (age 5-10) with Down syndrome, finding that not only did those with Down syndrome make more atypical speech errors, but there was also no reduction in error rates 24 months later. This difficulty around speech and language was addressed by Elaine Scougal, who explored the communication experience of parents who have children with Down syndrome. Through her qualitative data, she found that many parents felt there was a lack of support from language therapy services and only 6/13 were taught Makaton (a language programme) despite many young people with Down syndrome being taught it in schools. Dr. Hana D’Souza also addressed a different aspect of communication in parent-child interaction, face looking. She presented work showing that children with Down Syndrome and their parents, spent a higher percentage of time looking at each other’s faces, when compared to typically developing children and their parents. Of particular interest was the fact that this work by Hana was inspired by discussions at last year’s research forum. Thus highlighting the value of the interactions between parents, practitioners and researchers at this event.

Wendy Uttley’s talk ‘I can Work’, was a personal highlight of the forum, as she shared powerful and moving experiences of young people with Down syndrome in the workplace. Wendy’s case studies were based on a programme by her organization (Down syndrome Training and Support Service) that helps to find and facilitate paid work placements for individuals with Down syndrome. In the presentation, Wendy spoke about the impact on both the young people, who found more independence and confidence through working, and on the businesses who provided the placements, who reported that their workplaces had become calmer and happier.

Future directions
At the end of the forum, both the guests and speakers were encouraged to discuss any thoughts they had across the two days, and what they saw as being important for the direction of future research. One common theme was the need for more research to be conducted exploring individual differences in people with Down syndrome. Another key point was the need for more research to take place looking at which interventions are most appropriate for specific children with Down syndrome, and when these interventions would be the most effective. Many practitioners also commented that it would be useful for interventions to be designed to easily slot into the existing curriculum, enabling teachers to more easily administer these without disruption to scheduled learning. Researchers, practitioners and parents agreed that future work should focus on a more cohesive partnership between the three, by sharing tasks, establishing standardised test batteries, and working to create test batteries that are fine grained enough to be appropriate for assessing people with Down syndrome.

Take home message
One underlying principle was present throughout the forum, expressed by one quote in particular from Georgia Zimmer’s presentation: “The struggle is not having a child with Down syndrome, it is accessing the necessary provisions”. All of the research at this forum was designed in part, to better understand the difficulties and experiences of people with Down syndrome and to explore what interventions and support provisions can be established to help achieve a better quality of life and higher attainment for people with Down syndrome.

Written by Ashley Williams