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!
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