An academic from Liverpool Hope University has joined a ground-breaking new research project that aims to examine the impact of the Covid-19 pandemic on children and young people with intellectual disabilities.
The first-of-its-kind initiative is being funded by the Government’s UK Research and Innovation (UKRI) department in conjunction with the Economic and Social Research Council (ESRC).
The project is a UK collaboration, involving experts from the University of Edinburgh, University of the West of Scotland, University College London, University of Warwick, University of Surrey, University of Birmingham and Hope.
Dr Tom Gallagher-Mitchell is a Lecturer in Psychology at Hope and part of this Road to recovery: Understanding the impact of COVID and recovery phases on children and young people with Intellectual Disabilities and their families research. The year-long study will explore how these individuals and their families have experienced life during Coronavirus, as well as how they can be better supported through the recovery phase- moving beyond lockdown.
Tom explains: “The focus here is in examining the lived experiences of parents with children who have intellectual disabilities (ID), and the experiences of the children and young people themselves. How these families have been coping with the changes to their life brought about by the Covid-19 lockdown, is an important issue to address. Our project work is co-constructed with families capturing their perspectives to inform how community and health services can best support them moving forward”. “It’s a fascinating project that I’m proud to be involved with and it’s also an extremely worthwhile project, too.
“These individuals have often been lost in the wider conversations surrounding the pandemic leaving families to feel ignored. This hasn’t been done deliberately but the result is that a lot of the families have had really difficult experiences for more than a year now.
“Think about mask-wearing, for example - how have parents of children with intellectual disabilities dealt with those conversations or managed those behaviours? How do you articulate the importance of social distancing to a child with intellectual disabilities?
“There’s also uncertainty about the exit routes out of the pandemic for these individuals.
“And with this study we want to capture as broad an experience as possible. We want to know what has been challenging, but also their positive experiences, too.”
The initiative will concentrate on children and young people with intellectual disabilities aged 5-18 years old, and data will be collected through a mixture of surveys, questionnaires and interviews via various focus groups, with Research assistants located in Scotland and England, but aiming to collate insights from families across the UK.
Crucially, Dr Gallagher-Mitchell says the project isn’t just about the research - ultimately the team will also develop a website and resource space co-created with project participants for families and children and young people with intellectual disabilities, where practitioners can offer support and expertise from an informed perspective.
Explaining how mental health and wellbeing assessments will play a key role in the research, Dr Gallagher-Mitchell and his colleagues write: “The COVID-19 response strategy entailed limiting access to education, respite care, and specialist services reduced the available support for families, with unknown consequences.
“The relative vulnerability of children with ID was highlighted by a recent report by the Children’s Society which indicated that children with ID are more susceptible to wellbeing and mental health issues as a result of COVID and require urgent support in adapting to routine changes and understanding what is going on.
“These routine changes and reduction in access to services will continue for some time despite the recent implementation of the UK wide vaccination programme, further compounding mental health outcomes in children with ID and their parents.”
Recent research by academics at the University of Edinburgh described how the parents of children and young people with intellectual disabilities felt ‘unsupported and forgotten’ through the pandemic.
And the team adds: “This lack of support needs to be further explored and continually monitored during the recovery process to inform and steer support services, charities and policy makers so that support can be provided for these families at key times during recovery reducing poor mental health outcomes.
“Given the ever-changing landscape of COVID and the governments’ fast paced risk prevention strategy, this line of enquiry must be started as soon as possible so that follow up surveys can be completed throughout the recovery period and beyond COVID.
“This will help establish the origin of mental health issues, trajectories and lasting effects of COVID in this vulnerable group.”
The project is also the first of a kind - no study to date has examined the experiences of families who have children with ID during the pandemic and beyond.
And Dr Gallagher-Mitchell and his co-investigators conclude: “In addition, the current line of enquiry does not only provide a much needed voice to a vulnerable group that is currently underrepresented in funded research but also goes beyond this by attempting to identify the family set up and social demographics of these families that increase the likelihood of poor mental health outcomes in the child and parents so that these sub-groups at increased risk can be further supported during transition and recovery phases.”
There are approximately 351,000 children aged 0-17 with an intellectual disability across the UK, according to 2020 research by charity MENCAP.
** To find out more about the overarching project, head here.