Online survey to better support children with serious conditions during COVID-19 pandemic

The SHARE study is using online surveys to ask ‘How are you coping and what do you need?’ to better understand the needs of children with a serious condition and their parents during the COVID-19 pandemic.

Led by Southampton researcher Professor Anne Sophie Darlington, the national SHARE study explores the pandemic’s effects on children with serious health conditions and their parents, and what support they feel would help.

Assessing needs

Launched in April, SHARE initially focussed on children with cancer, together with researchers at the University of York (Dr Bob Phillips & Dr Jess Morgan) and the Children’s Cancer and Leukaemia Group (CEO Ashley Gamble) but has since been expanded to include children with a wide range of conditions, including congenital heart disease and a chronic kidney condition.

There are separate online surveys developed for and with children and parents living with each condition, in collaboration with specialist health professionals and charities.

Participants are also asked if they are happy to complete the survey again two and six months later, so the researchers see how their situation has changed.

Conditions included

Conditions currently included in the study are cancer, congenital heart disease, a kidney condition, allergies, hydrocephalus, cystic fibrosis and life-limiting conditions.

All surveys include questions on the family’s experiences during the outbreak, information they have and need, what support they would like, and how they are making decisions related to COVID-19. It also has an open box to record other comments.

The surveys for cancer, congenital heart disease, kidney conditions and allergies have now closed, and the research team is analysing the results.

Taking part

The surveys for these conditions are currently open:

Hydrocephalus

Parent survey: https://www.isurvey.soton.ac.uk/37378 Child survey: https://www.isurvey.soton.ac.uk/37379 

Cystic Fibrosis

Parent survey: https://www.isurvey.soton.ac.uk/37418
Child survey: https://www.isurvey.soton.ac.uk/37421

Life-Limiting Conditions

Parent survey: https://www.isurvey.soton.ac.uk/37377

For more information, please email SHARE.study@soton.ac.uk.