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Why the COVID-19 pandemic may be particularly challenging for families living with rare conditions

Families across the UK are experiencing major changes to daily life at the moment, but families of children living with rare genetic and neurodevelopmental conditions will experience some of the greatest impacts of the Covid-19 pandemic. 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. 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.

Along with a UK-wide network of experts, I launched the CoIN Study to better understand the impact of the pandemic on mental health and wellbeing.
Charlotte Tye

My existing research focuses on gaining a better understanding of the cognitive and behavioural difficulties that many people living with rare conditions face. Much of my research involves face-to-face assessment and so has been put on hold during the pandemic. When we started speaking to families involved in our studies to discuss remote assessment, the huge impact of the pandemic became clear. That’s why, along with a UK-wide network of experts, I launched the CoIN Study, which is an online study aiming to understand the impact of the pandemic on mental health and wellbeing in families of children with rare genetic and neurodevelopmental conditions.

Children with these rare conditions will often live with a unique combination of physical and mental health problems that have necessitated strict social distancing or shielding. Many will 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.

We know that, even under normal circumstances, 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 feed back 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 follow-up surveys and reports of our findings. Ultimately the results will be used to inform how we can best support families both now and in future disruptive emergencies.

Interesting in taking part? We’re asking parents of children aged from birth to 16 years old with a rare genetic or neurodevelopmental disorder to complete regular online surveys both during and after the pandemic.
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