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Online survey to assess needs of children and young people with cancer during COVID-19 outbreak

Published: 17 April 2020
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SHARE will address the needs of families of children and young people with cancer in light of COVID

Researchers at the University of Southampton have initiated a study, together with colleagues at the University of York and the Children’s Cancer and Leukaemia Group, to better understand how best to address the concerns and needs of families with children and young people who have cancer who may feel particularly vulnerable during the COVID-19 outbreak.

The SHARE study (How to support children with cancer and their parents during the COVID-19 outbreak?) is designed to urgently increase our understanding of evolving experiences, information needs and decision-making of families facing extraordinarily stressful circumstances.

Over 50 families have already responded to the online survey – there is one for children and another for parents and carers - that opened a few days ago by the research teams at Southampton and the University of York. Their aim is to analyse the data quickly and convert concerns raised into guidance and support with the help of national charities, the University Hospital Southampton NHS Foundation Trust and The Leeds Teaching Hospitals NHS Trust.

“During the COVID-19 outbreak, children and young people with cancer may be more vulnerable because of their weaker immune system during treatment, and their families will need to constantly assess the information they receive and continue to make decisions in a changing environment,” explained Professor Anne-Sophie Darlington, Professor of Child and Family Psychological Health at the University of Southampton and Principal Investigator. “In addition, information provided through established media outlets and social media is constant and everchanging, so not always stable or reliable. This situation alone illustrates the importance of investigating children’s and parents perspectives and experiences with some urgency.

“Whilst we recognise that many people and organisations are doing what they can to provide support interventions and materials aimed at helping children and young people, it is only through investigating the first-hand experiences of the children, their parents and carers that we will be able to tailor and provide the right support they need, in terms of guidance, information updates, and online interventions to reduce distress and anxiety,” Professor Darlington continued.

The researchers plan to the open scope of their study in the near future to include those with heart and kidney conditions.

To take part in the SHARE study survey, parents should visit https://cclg.uk/COVID-parent-survey and children and young people should visit: https://cclg.uk/COVID-CYP-survey.

More information is available from the research team by contacting: SHARE.study@soton.ac.uk

 

 

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