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Down syndrome Research Forum, 2017

I have just returned from the Down syndrome research forum, with Dr Silvana Mengoni hosting this year’s forum at the University of Hertfordshire. It always feels like a treat to attend a conference dedicated to Down syndrome, as I find myself interested in every talk. The forum gets together a room full of people who all share expertise relating to individuals with Down syndrome, but with vastly different experiences, and this allows for great discussions and sharing of different perspectives. My favourite talks tend to be those given by parents because their experience is so rich, and I have left the conference feeling very inspired by their stories.

This year I presented the findings of a systematic literature review on motivation in children with Down syndrome, carried out with colleagues in the DSL plus project. While motivation is not my usual research topic, it is clear that motivation (i.e., the driving force behind our actions) is a key factor to consider in all aspects of a child’s learning, and therefore applies to the development of interventions, be it for language, memory or any other ability. I was really pleased to have the opportunity to chat with Prof David Messer at the forum as he published the book ‘Mastery motivation in early childhood’, and I am currently quite engrossed in this book!

Some of the main topics covered in the forum this year were:

1. Articulation and the importance of picking up on poor intelligibility in our language measures, as well as how to address these problems. For example, rhythm/song appears to provide a useful support. It was highlighted that intelligibility tends to be a regular concern for parents in terms of their child’s language.

2. Understanding of mathematics. This was highlighted as an area of difficulty for individuals with Down syndrome. But studies highlight that there is hope for improving number skills in chidlren With Down syndrome. For example, Anne Gullick, a teacher, Down syndrome advisor and mother to a little boy with Down syndrome highlighted the ability of children with Down syndrome to develop number sense. A theme highlighted in this and other talks, and also highlighted in our motivation findings was the importance of autonomy and giving the child time to work out the answers. Another message was the importance of framing the question in a way that makes sense to the child, for example, Anne showed a video of a teaching session with her little boy, he initially confused division with adding together. By using real sweets and explaining how these need to be split between four friends, the division problem was successfully solved, with patience and the room for autonomy also appearing to play an important role. There were many other interesting talks about mathematics, and this appears to be becoming a much hotter topic than previous years!

3. A number of presentations were about having the voice of the child/individuals with Down syndrome be heard, and highlighting the value of this for research and practice as well as for the individuals themselves. Clare Carroll, Niamh Parker, Eileen O’Donnell and Tracy Beirne from the National University of Ireland, Galway, reported a study involving adults with Down syndrome in training catering staff in communication awareness. This led to catering staff feeling more comfortable in the way that they communicated with customers with communication difficulties, including those with Down syndrome. Additionally, the individuals with Down syndrome involved in carrying out the training reported how valuable the experience was to them.

While the above highlight some of the key themes there were also various other interesting talks, such as the recording of health and needs of children with Down syndrome. As well as various language training approaches with positive outcomes. There was fruitful discussion about finding the balance between highly systematic, controlled approaches and the importance of this for interpretation of results and publication vs. a degree of flexibility and individualization in the approaches being used.

I have come away from the forum with lots of exciting ideas, and had a really enjoyable time!

Liz

Thanks to all participants in todays conference

 

 

On behalf of the Department of special needs education, The national library, Norwegian network for Down syndrome and Norwegian network for research on Down syndrome I have the two last days had the pleasure to welcome about 100 researchers, parents and practitioners from America, across Europe and from the south to the north of Norway to the conference “Communication in individuals with Down syndrome – which future does the research predict?” In addition 108 computers clicked in on the streaming day 1 and 122 on day 2 which means that at least a mean of 215 people possibly take part each day.

It is the first time in the history that an international research conference within this area has been hosted in Norway. The time of this conference was not chosen randomly. Here in Norway we have had a huge debate about Down syndrome over the recent years. First, the birth rate has decreased and the number of abortions has increased remarkably. Second, the minister of health approved the use of the blood test NIPT (Non-Invasive Prenatal Testing) and third a new PhD student in philosophy named Aksel Braanen Sterri published a disputed media article claiming that people with Down syndrome will never be able to live full worthy lives. The article was published without justification and research evidence.

Lack of evidence may also be a challenge in the field of language and communication, which is one of the cardinal areas of difficulty for individuals with Down syndrome. There are several challenges related to existing research on Down syndrome; few studies, especially few RCT studies have been conducted, there are often challenges related to comparison groups or the absence of a comparison group. Sample sizes are often small, and age spread samples are common. Further there are large variations in skills and development in this clinical group - the within group variation is even larger than the within group variation in typically developing children.

Of course not all studies suffer from such limitations mentioned above but the aspects mentioned are common challenges in the research field. And it is timely to wonder why we are not making greater steps to address quality in the field. There may not be one main explanation for this but rather a set of different aspects may have influenced the situation.  In the educational Program from  the Research Council of Norway there have been few projects on Down syndrome. Without looking into the firmer applications it is easy to suggest that this has to be on the research council and their prioritizations. However, this year I have been on the panel in the Swedish research council and there have hardly been any applications related to Down syndrome at all. The prevalence of the syndrome may explain some of the absence; since the prevalence is low the studies are often expensive to run so the economy may be another related explanation. Also, the prestige related to doing research within this field is lower since the relatively low prevalence makes the publications less likely to be cited and thereby strengthen the researcher’s track record. However, over the last decades there has been a remarkable change in the field. The number of intervention studies has increased and as Silje Hokstad talked about in her speech the implementation quality in these studies has also been given more attention.

Still there are challenges in the field, there are researchers that are genuinely passionate about this population and that also conduct high quality research.  In addition several resourceful parents and practitioners exist. The 90 minutes from practice session today gives good examples of that. Still parents and practitioners usually have no research results to report, knowledge development relies on an interaction between researchers, practitioners and parents (and child) and therefore to value each other is important for real knowledge development.

This conference aimed to present research related to communication and language development / difficulties in individuals with Down syndrome; one section was devoted to reading development and reading instruction, as well as dialogic reading and the quality of pictures in the picture books. Another focused vocabulary and grammar as well as communication and language intervention. Finally, also results from treatment of motor speech disorders were presented. The ppt from both the section of research and practice will be published on our blog shortly 

The conference also served as an arena where an international small research community including parents and practitioners were updated on the latest research and discussed the studies presented, both related to content and methodology. Contacts across borders were linked to ensure a stronger international research community within this field in the future.

I am grateful to all speakers, participants and live streamers, NNDS, and to the DSL+-team for their positive contributions and for making this conference successful. A great thank to the National Library for hosting the conference, for coffee, tea and a lovely lunch, as well as for technical support and live streaming the talks. Especially thanks to Johanne Ostad who led us through the program. Many thanks also to the municipality of Oslo that hosted the lovely conference reception and finally, I want to thank the research council of Norway for granting the conference.

Many thanks for making these two fantastic days!