Individuals with Williams Syndrome (WS) have been shown to have increased levels of anxiety compared to the general population, and indeed compared to other neurodivergent populations. While we know about heightened anxiety in WS, we know much less about the impact on the wider family, or family well-being more broadly. Of the limited research which has been conducted on family impact, it has been suggested that there may be heightened levels of anxiety in the mothers of children with WS.
There are very few cross-cultural insights into WS, and how aspects of the condition might be shaped by the environment. Most of the current research on WS comes from Western cultures, such as the UK & US. It is important to get a better perspective of how culture may shape anxiety presentation in WS, and the impact on the broader family. Recent research from the Centre for Neurodiversity & Development and colleagues in Japan showed that although anxiety is equally present in children with WS in both countries, there were subtle differences in the type of anxiety experienced in these children depending on which country they were from. This highlights the need for a clearer understanding of cultural differences, in order to provide an appropriate evidence base for intervention development.
Funded by Autour Des Williams, we are running a study to increase understanding of anxiety and well-being in parents of children with WS across a number of different countries. We are working with families in England, Germany, Spain, France, Sweden, Czech Republic and Serbia! We hope that this will increase both knowledge of family well-being in Williams Syndrome, as well as increasing our cross-cultural understanding. We are running this study using an online platform, however paper copies can be made available for families wanting to participate, who do not have online access.
The research team consists of PI’s Prof Debbie Riby & Dr Mary Hanley, Research Assistant Jess Hirst, and Psychology Masters Students (Bethany Lee-Shield, Caitlin Peacock & Rebecca Puntis).
If you are a parent of a child with Williams Syndrome and are interested in taking part in taking part in our study please follow one of the links below for the online questionnaire in the appropriate language:
If you have any further questions about taking part, or would like to discuss anything about our research, please get in contact with one of the members of the research team:
deborah.riby@durham.ac.uk
mary.hanley@durham.ac.uk
jessica.r.hirst@durham.ac.uk
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