Road to Recovery

Intellectual Disabilities (LD) are characterised by social, and cognitive difficulties that are often associated with behaviours that challenge. 

The focus of this project is to understand the impact of the COVID-19 response strategy on children and young people with Intellectual Disabilities and their families. The strategy, during the initial lockdowns and recovery, entailed limiting access to education, respite care, and specialist services, therefore reducing the available support for families with unknown consequences. 

The relative vulnerability of children with LD was highlighted by a recent report by the Children's Society (2020), which indicated that children with LD were more susceptible to wellbeing and mental health issues as a result of COVID-19 and required urgent support in adapting to routine changes. These routine changes and reduction in access to services will continue for some time despite the implementation of the UK wide vaccination programme, further compounding the impact for children with LD and their parents.  

As the country moved into COVID transition phase, the current project:  

1. identified the family structure and social demographics of families who have a child with LD who are at greater risk of parent and child negative mental health outcomes 
2. explored the lived experiences of children and young people with LD and their caregivers during COVID and transition phases including the lasting effects of COVID 

Preliminary data from our online survey aims to investigate parents’ experiences during the pandemic in terms of their mental health, access to support, parent coping strategies and child behaviours. 

The Road to Recovery project is using photovoice methods in order to capture the thoughts and experiences of children and young people with intellectual difficulties both during the pandemic and now during the recovery phases. This method can involve taking pictures, as well as drawing and storytelling activities, which helps children and young people express themselves to ensure their voices and experiences are heard. 

The Road to Recovery project asked parents of children with intellectual difficulties and complex needs about their experiences during lockdown, as well as how they feel now the restrictions are starting to ease. 

The project explored child behaviours that challenge (such as aggressive outburst or self injury), caregiver coping (problem-focused coping, which refers to actively tackling or managing stress; emotion-focused coping, which includes efforts to reduce the emotional consequences of stressful situations; avoidant coping, which indicates efforts to disengage from the stressful situation) and caregiver distress (stress, anxiety and depression) over two time periods. The first time period (T1) took place during Covid-19 restrictions, from August to December 2021 and the second time period (T2) took place after Covid-19 restrictions began to ease, from January to March 2022. The study explored whether child behaviours that challenge and caregiver coping strategies changed over time, and whether caregiver coping predicted psychological distress in caregivers of children with and without intellectual disability during and after lockdown.

The project concluded that social demographics (such as caregiver age, occupation, or marital status) were not related to child behaviours that challenge and caregiver psychological distress during Covid-19 and after. It was found that levels of avoidant coping and emotion-focused coping were associated with caregiver stress and anxiety in both caregiver groups in T1 and T2. Only avoidant coping was associated with depression at both time points. This indicates that targeting caregiver coping could be a fruitful way to reduce negative mental outcomes such as caregiver psychological distress. 

This work was supported by the Economic & Social Research Council (ESRC), as part of UK Research & Innovation’s rapid response to Covid-19 (Grant Number - ES/W001985/1).