by Dr Eve Hirst

The Down Syndrome Research Forum 2021, hosted by Down Syndrome Education International was held online from 11th to the 12th March this year. The shift from face-to-face to online came, as most things this year, in response to the COVID-19 pandemic, but some notable benefits of an online conference came to light throughout the two days. The international feel of the conference was palpable with researchers from Russia, Norway, Canada, Germany and Ireland to name a few, as well as presenters from all over the UK. The audience reached even further with a total of 32 different countries represented among over 300 participants. The result was an opportunity to share ideas, research and creativity with a community stretching beyond the borders of geography and politics. Closer to home, many of us have struggled with isolation and loss over the past twelve months during three lockdowns in the UK. But the anticipation of normality and the age of technology in the wake of a devastating pandemic have brought with them hope and wisdom: that together we can learn and move forward; that obstacles can be overcome; that we need one another to thrive.

Wendy Uttley, from Down Syndrome Bradford, opened her presentation on the first day with a slide saying ‘Takiwatanga’-a Maori word for Autism meaning ‘in their own time or space’. COVID-19 has certainly given many of us time and space-and what have we learned?

 

Throughout the two days we heard innovative ways that education has been developed and delivered online throughout the pandemic. Early Intervention groups in Bradford have continued in a similar format over zoom with experience showing children have engaged better sitting up at tables during these sessions. Similarly, Positive About Down Syndrome teamed up with LETS Go! to provide video recordings for early years and online support groups for families in ‘The PEG’s Project’ with positive feedback: both children and parents benefitted from sharing experiences together and the social interaction the sessions brought. Teach Me Too also aimed to empower and encourage parents at home with children by developing video resources; parents reported a particular improvement in their children’s communication skills as a result. Parental support was an important discussion point throughout the day and a memorable highlight was hearing from Debbie Austin on her experiences with Positive Behaviour Support and how it has changed her family life after her beautiful daughter, Lucy, was diagnosed with Autism.

 

The second day of the conference was dedicated to Speech and Language Therapy (SALT) and we heard about various methods of promoting and encouraging language in children with Down Syndrome (DS). The mismatch of need for and availability of resources, especially SALT, was a recurring narrative, provoking parents and charities to creativity in order to deliver therapy.


The benefits of technology for both children and therapists were recognised through successful implementation of teletherapy and teamwork was hailed as an important factor when delivering online therapy to help overcome some of the challenges associated with working online.

 

PANTS4SCHOOL, an initiative developed by Positive About Down Syndrome to equip parents with the tools and knowledge to potty train, uses social media as its platform to educate and support a large number of users. Using online surveys, they have collected positive feedback and they continue to develop the programme.

 

Over the last 12 months of the pandemic, we have all been pushed to find new ways to connect with family and friends to maintain psychological and physical well-being. This has been particularly true for those that have been furloughed from work.

Many adults with DS in Ireland have benefitted from the ‘Ability Online’ course that was developed by Down Syndrome Ireland as a response to the pandemic to allow adults to establish new friendships and build on a range of skills via zoom. We heard how successful the course has been in increasing a sense of responsibility and independence in the group through friendships and social interaction available online. It was suggested that for some adults socialising via zoom or equivalent was preferable as it removed some of the intimidation experienced in face-to-face interaction; moving online enabled these challenges to be overcome in a comfortable environment they have some control over.

However, some caregiver concerns about technology use were highlighted during the conference too. These included worries about prolonged screen time; online vulnerability to harmful content; addictive aspects of gaming; obstacles to using technology. These are relevant concerns that need to be considered as technology and online content becomes more widely used.

 

Having not attended the research forum before, my take home message from the two days was one of optimism and achievement. This community has overcome some significant obstacles throughout the past year, using technology and initiative to develop new, pioneering ways to educate and disseminate the wealth of research and information that has been collected. We are continuing to see success with digital resources, at times beyond the progress of face-to-face interaction, paving the way for a new approach, keeping a holistic focus at the heart.

Despite this, I wonder how far technology can really take us. Can we really replace physical experiences with digital ones? I think perhaps not, but there is certainly potential.

Further topics covered throughout the conference included: education in schools; understanding and meeting the needs of children with a dual diagnosis of Autism and DS; service provision; hearing loss and a great deal more on speech and language. Delivered by a range of professionals, all incredibly inspiring work demonstrating how far we have come in understanding the needs of children and adults with Down Syndrome and how we can best support these needs. With technology on our side too, the future is indeed bright!

 

A huge thank you to the Down’s Syndrome Research Foundation UK for giving me the opportunity to attend the Research Forum online. It was certainly a privilege to hear the work that is being conducted internationally and gain a greater understanding into the gaps in our knowledge around Down Syndrome.

Happy World Down Syndrome Day to everyone for the 21st!!

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About Dr Eve Hirst

“My name is Eve and I’m a junior doctor currently working in A&E in the North West. I have two younger brothers with Down Syndrome who are the life and soul of the family!

I’m passionate about ensuring that services are as accessible as possible to people with disabilities and that medical care is not compromised by communication difficulties.

I have a particular interest in care of children with Down Syndrome in the first months and years of life, and support of parents during this time, so they can enjoy their beautiful new baby with as few health concerns as possible, confident in medical care and their own ability to manage their children’s needs.”