Understanding the challenges of COVID-19 for families living with rare syndromes

Dr Charlotte Tye
ERUK & Autistica Fellow
King’s College London

This year Dr Charlotte Tye was awarded the ERUK & Autistica Fellowship Award to investigate brain-based predictors of autism in infants with epilepsy, which will begin in 2021. In this blog, Dr Tye tells us about her current study which aims to investigate the impact of the COVID-19 pandemic on families of children with rare genetic and neurodevelopmental disorders, many of whom also have epilepsy.

Families across the UK  have been experiencing major changes to daily life recently, but it is the families of children with rare genetic syndromes that will experience some of the greatest impacts of the COVID-19 pandemic. There is an urgent need for research to investigate the effects of the pandemic on mental health, particularly within these more vulnerable groups, in order to understand how to improve support. While there has been a flurry of online surveys over the past few months, these are likely to overlook the specific challenges these families are facing.

My current research focuses on gaining a better understanding of the cognitive and behavioural difficulties faced by many people living with epilepsy and associated rare syndromes. Much of my research involves face-to-face assessment and so has been put on hold during the pandemic. When we began remote assessments with the families involved in our studies, the huge impact of the pandemic became clear. That’s why, along with a UK-wide network of experts, I launched the CoIN Study*. The aim of this online study is to understand the impact of the pandemic on mental health and wellbeing in families of children with rare genetic and neurodevelopmental disorders, many of whom also have epilepsy.

Children with these rare syndromes will often live with a unique combination of physical and mental health problems that necessitate strict social distancing or shielding. Many will often rely on a range of medical professionals, and access to this healthcare, and other intervention or treatment, has been drastically changed or removed during the pandemic. The mental health impacts of the pandemic will be felt for several months, even more so for these families, and the long-term effects of loss of support and healthcare are unknown.

Even under normal circumstances, we know that behavioural difficulties greatly impact upon quality of life in individuals with rare syndromes and that families of children with rare syndromes experience anxiety, stress and low mood. The sudden change to daily life, such as carefully established routines and relationships, support networks, as well as professional support, combined with a higher risk of infection, is likely to impact upon wellbeing in both children and their parents, and even worsen existing difficulties. Because behavioural difficulties in children are associated with poorer mental health in parents, it is important that we understand their interaction during the gradual lifting of restrictions.

A key part of the CoIN Study is to rapidly feedback results to the community, as well as to design and distribute tailored information and coping tips based on our participants’ responses. We’ll also be asking parents to help to design later surveys and to be involved in describing the results, to make sure priorities are being met and the most important messages are conveyed. Ultimately the findings will be used to inform how we can best support families both now and in future disruptive emergencies.

Interested in taking part? We’re asking parents of children aged from birth to 16 years old with a rare genetic or neurodevelopmental condition to complete regular online surveys both during and after the pandemic. Find out more and sign up on our website: www.coinstudy.co.uk.

-Dr Charlotte Tye

*CoIN Study full title: Covid-19 impact on wellbeing in families of children with rare neurogenetic disorders

Related Readings:

Find out more about Dr Tye’s ERUK & Autistica Fellowship Award on investigating brain-based predictors of autism in infants with epilepsy here.

Promoting, encouraging and funding research into the causes, diagnosis and clinical management of people with epilepsy and associated conditions

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Developing the next generation of epilepsy researchers and capacity building the epilepsy research environment

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Accelerating innovations for people with epilepsy by supporting research that will influence clinical practice and health policy

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