Down Syndrome Research Forum 2022

Charlotte Bradley attended the first day of the 2022 Down Syndrome Research Forum and has written this blog on one specific session, Dr . Kelly Burgoyne’s talk on language intervention. 

The forum consisted of an array of talks and discussions surrounding different topics relating to Down syndrome including therapy and services, augmentative and alternative communication and the impacts of Covid-19 on families. 

More specifically this talk was in the symposium on interventions. Several different interventions were discussed but the one I found most intriguing was on Kelly Burgoyne’s work on parent delivered early language interventions. It is critical to support early language development in children with Down syndrome to support their cognitive and social development as speech and language skills are often delayed in this group. The speaker noted that to be effective language-based interventions require intensity, frequency and parental support to aid children’s speech development. 

Anyone who is frequently around a child is potentially in a suitable position to support children’s speech and language. However, educators or other professionals cannot always provide the necessary one-to-one support for children with Down syndrome. This led to the development of the parents and children together (PACT) programme which helps parents aid their child’s early language development. The first PACT study began in 2015. This was originally designed to look at effects on pre-school children spoken language and how these skills could be improved over the next 3 years. From 2019 onwards variations of this project by Kelly Burgoyne and her colleagues expanded this programme to look at how it could potentially benefit families of children with Down syndrome. 

PACT is a 30-week programme, delivered every day, 5 days a week in 20-minute-long sessions. It involves a commonplace activity such as shared book reading where an adult reads to an individual child or a group of children and uses interaction to ensure the child (children) are engaged. The aim of this task is to reinforce and bolster the language learning that happens instinctively through this activity. There is a wealth of research that supports this technique in its ability to enhance children’s language and literature skills., This programme was originally devised for typically developing children who are at risk of language delays not those with Down syndrome.  This appeared to be effective in developing children’s language skills, being most effective 6 months after teaching had ended.  The current study explored building upon this programme to look at how it might work for children with Down syndrome. This study is spilt into 3 stages:

The project started in 2015 and is still on going. The first phase is a 12-month concentrated collaboration with 5 families with 3–6-year-olds with Down syndrome. During this time, the researchers investigate which aspects of the intervention are successful or not and then adapt the programme. For the first 5 weeks the programme runs as originally designed. Then any adaptions are implemented, derived from parent feedback. This type of research design has pros and cons. It is beneficial because it allows the intervention to be piloted before it becomes a widespread speech and language intervention. However, it is hard to design a ‘one-size fits all’ technique that works for all individuals, especially when it comes to those with Down syndrome as individuals have wide variation in their strengths and weaknesses. 

In the second stage, the team look at potential benefits and costs and how feasible the intervention is to implement. In this cycle, 24 families will take part. After a screening they will be randomised into 2 groups, an experimental condition who will take part in the adapted programme across a full 30 weeks, and a control group who will receive a different training programme that is also anticipated to support language development.

In the final part of the project, a delayed post-test will be completed, 6 months after the programme has ended to see if it has long term effects. This style of intervention is highly advantageous as it is derived from parental feedback. Overall, although the long term effectiveness is still yet to be determined, the concept and design of this programme has the potential to kickstart speech and language development in individuals with Down syndrome. However, a critique of the design is that the control group also receives an intervention that supports speech and language. Although, this is implemented so that no individual misses out on literacy support, it does make it harder to tell whether the target intervention is effective. For research purposes it may be more beneficial to implement a control condition that supports an alternative ability such as, numeracy or spatial skills. This would allow a clearer baseline comparison for the effectiveness of the PACT programme. Nonetheless, this was a very interesting talk and is an excellent opening for future research/ interventions on speech and language development in those with Down syndrome.