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Online research with children with neurodevelopmental disorders
By Admin, on 30 November 2020
(image from Williams syndrome Association)
As you may know, the CDLD Lab works very closely with individuals with Williams Syndrome to understand how we can best support their learning and development. Williams syndrome (WS) is a rare genetic disorder, affecting approximately 1 in 18,000 births. Due to the rarity of the disorder, recruitment of individuals with WS for studies conducted in the lab can be difficult. In addition, participants often have to travel long distances to come to the lab, which makes it a true commitment on their part, but also expensive for research bids. As a result, lab-based studies often include very small numbers of participants with WS which makes it difficult to see how results of these studies apply to other people with WS who have not taken part in the research (although 30 participants can be as much as 5% of the entire population depending on age range, so the problem about small numbers are relative too!).
Long before COVID-19 entered our lives, my colleagues and I started to address these accessibility problems by developing online assessments for individuals with WS, as well as other development disorder groups, such as individuals with Down syndrome and autistic children. Most of these individuals were part of our Transcend study, which explored the transition from primary to secondary school for children aged 11 years old. However, since then we have extended our online assessments for individuals aged from 6 years old, all the way to adulthood.
What does an online assessment with the CDLD lab look like?
In our testing sessions, children sit in front of their computer in their home with the support of their parent or caregiver. Then one of the researchers from the CDLD lab calls them via Zoom and shares the researcher’s screen with the child. Consent is obtained from the parent or caregiver before the session via email, and child assent is confirmed at the start of the session. While we always ask one parent or caregiver to sit next to the child, this adult is instructed not to repeat the instructions or to look at the screen, as this could give away the correct answer for the child. Parents are involved by reading out the answer number for the researcher, when the child points at their answer on the screen.
What assessment tests do we use?
In our sessions we cover a wide range of standardised tasks: Raven’s Coloured Progressive Matrices (RCPM), British Picture Vocabulary Scale (BPVS), Digit span forward (DF) and Digit span backwards (DB) from the British Ability Scales, Test Reception of Grammar (TROG), as well as the Copying task from the British Ability Scales for the younger participants. We also ask children to complete the Numerical Operation sub-scale from the Wechsler’s Individual Achievement Tests (WIAT). These assessments are often used by practitioners to see how the child with WS or learning difficulties compares to typically developing children of a similar age and can give us further insight into the child’s strengths and difficulties as well as what support the child would benefit from in the classroom. The data we collect either contributes to our research projects or are part of the EHCP support we provide to parents and children in our assessment clinic. All data is securely stored and only accessed by the researchers.
Most of these tests (BPVS, RCPM and TROG) require a child to select a correct answer out of 4 or 6 options on the screen, whilst for DF and DB the researcher reads out numbers and the child needs to repeat them either in the same (DF) or backwards order (DB). For the copying task, we show the child the stimuli on the screen, one-by-one and the child copies them on paper (one piece of paper per stimuli) and then after the assessment session the adult is asked to take a photo of each of these drawings and email the drawings or to post them to the researcher for scoring. For the WIAT numerical operations we post a record form to the parent but instruct them not to open it (on the back of the envelope it has our name and instruction not to open it).
Here are a few things my team and I have learned along the way:
- There are no differences between online performance and face-to-face performance for individuals with Williams syndrome on Raven’s Coloured Progressive Matrices.
- For younger children you need to make the instructions much clearer. For example, show the picture of the RCPM first and then the choice options appear on the screen. This is because without being able to point to the missing part, young children fail to understand that there is a piece missing and that they have to find that missing piece from the 6 options. Although thus is slightly different from the in-person standardised instructions, during face-to-face testing the researcher would usually point at the pictures and options and make the difference between the picture and the options explicit as well.
- For the Numerical Operations task that we post to parents before the session, we ask parents to rip open the envelope in front of the screen so that we can see that the task is new to the child and the child has not been coached or trained on the items.
- We take a lot more shorter breaks between tasks: we ask the child and parent to switch their camera and sound off (and the researcher does the same) but we remain in the Zoom call to avoid any reconnection issues. This allows the child to have a proper break.
- Completing the tasks on small screen (phone or tablet) can be tricky so we do ask parents if a laptop or computer is available when we arrange a session.
- Parents receive an email from us with clear instructions about what to expect in the Zoom call (including number of tasks, who will be on the call, whether call will be recorded, Zoom link details) but we also ask parents to complete a short questionnaire about the child’s abilities and difficulties as well as what the child is interested in so we can establish a relationship with the child much easier.
- To keep children motivated we tell them we have a mission or puzzle that they need to complete and after each completed task they get a picture that forms part of the puzzle or mission. In other cases, we give the children visual stickers and rewards (short video clips for example to watch).
- Finally, we sent children a voucher for their time so they can get a real reward for their time and efforts!
Have you used online assessments or been a participant? What worked for you or what would you recommend? Do let us know, you can email j.vanherwegen@ucl.ac.uk
