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Road to Recovery Project: overview, update and final recruitment call

Updated: Mar 17, 2022

Road to Recovery Project: Photovoice

Caregivers and children with intellectual disabilities (ID) are vulnerable to having difficulties with social and mental wellbeing. ID is characterised by limited social, cognitive, and adaptive skills such as communication, learning, and self-care. Individuals with ID often have challenging behaviours (verbal/physical aggression, self-injury, etc.), which surface when routines or enjoyable activities are disrupted. Since the outbreak of COVID-19 and the enforcement of nation-wide restrictions, such disruptions have become prominent and prolonged.

To better understand how these disruptions have impacted mental health of carers and children with ID, researchers from the University of Edinburgh began the Road to Recovery Project in 2020. They spoke with carers, healthcare practitioners, educational staff, and charity groups from around the UK who are actively involved with children with ID and their families. The Fragile X Society participated as a UK-based charity, as Fragile X Syndrome is the most common inherited cause of ID. Discussions were held around three main topics: experiences during the pandemic, challenges faced in the recovery phase, and future recommendations.

In November 2021, the Project composed an update on their findings. Struggling to understand and explain COVID-19 restrictions to their children, losing enjoyable routines, remaining in isolation, feeling avoidant and disengaged, and having reduced access to educational, supportive, and respite services were the primary factors causing high levels of distress for carers. Such distress spurred more challenging behaviours in their children with ID and increased anxiety in the wider family, particularly the neurotypical siblings. Healthcare and educational workers reported similar levels of distress and exhaustion from being overworked and under-supported. Finally, a widespread reduction of staffing and provisions greatly affected Charity Groups, who in struggling to support themselves failed to support their members through the pandemic and the recovery phase.

COVID-19 has undoubtedly impacted coping strategies of carers and challenging behaviours of children with ID. To restore mental wellbeing, these individuals deserve targeted interventions and more reliable support from clinical and social care centres, who in turn require a wider staff body, better training in mental health and peer support, and more.

Important note: this Project remains open for recruitment until the 31st of March! If you as a carer are interested in sharing your experiences of how the COVID-19 pandemic affected yourself and your child(ren) with ID , please email with a request to enrol.

To access more resources about the Project's findings so far, please visit the following link: Project updates | The University of Edinburgh

Emma Mather-Pike

Research Information Manager

Fragile X Society

16 March 2022


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