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

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

The SHARE study (How to support children with a serious condition 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.

Our team of researchers has developed surveys covering a number of serious conditions to find out what help you may need during this trying time. To participate, please follow the links below to complete the survey.

The SHARE study has recently been allocated over £13,000 raised from the Southampton Coronavirus Response Fund: an emergency fund set up by the University that supports projects researching and tackling the COVID-19 pandemic.

Many families have already responded to the online survey’s opened 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 and other serious conditions 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 ever-changing, 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 have broadened the scope of this study and numerous conditions are now a part of the research. This includes: Cancer, Cystic Fibrosis, Life-Limiting Conditions, Hydrocephalus, Heart, and Kidney Conditions.

To take part in the SHARE study survey please follow the links below:

Cancer Timepoint 1 survey complete - closed
https://www.isurvey.soton.ac.uk/36645 Parent Survey
https://www.isurvey.soton.ac.uk/37312 Child Survey

Kidney Conditions Timepoint 1 survey complete -closed
https://www.isurvey.soton.ac.uk/37305 Parent Survey
https://www.isurvey.soton.ac.uk/37312 Child Survey

Heart Timepoint 1 survey complete - closed
https://www.isurvey.soton.ac.uk/36923 Parent Survey
https://www.isurvey.soton.ac.uk/36926 Child Survey

Allergy Timepoint 1 survey complete - closed
https://www.isurvey.soton.ac.uk/36925 Parent Survey
https://www.isurvey.soton.ac.uk/36926 Child Survey

Hydrocephalus - closed
https://www.isurvey.soton.ac.uk/37378 Parent Survey
https://www.isurvey.soton.ac.uk/37379 Child Survey

Cystic Fibrosis - closed
https://www.isurvey.soton.ac.uk/37418 Parent Survey
https://www.isurvey.soton.ac.uk/37421 Child Survey

Life-Limiting Conditions - closed
https://www.isurvey.soton.ac.uk/37377 Parent Survey

For more information email: SHARE.study@soton.ac.uk