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Understanding the impacts of Covid-19 for children and young people with life-limiting conditions – a parent survey (SHARE)

This online parent survey is investigating the experiences, information and support needs and decision-making for children and young people with a life-limiting condition in response to the Coronavirus pandemic. Parents will be surveyed now and again in six months to understand the longer-term impacts of Covid-19 for the families of children with a life-limiting condition.

We initiated this study after the parents of our Family Advisory Board shared some of their own experiences and concerns, and asked the Martin House Research Centre if they could help. To get started quickly we decided to collaborate with the SHARE study, led by Professor Anne-Sophie Darlington at the University of Southampton, which had already designed surveys for children with cancer and other serious conditions, but not children with life-limiting conditions (https://www.southampton.ac.uk/healthsciences/research/projects/covid-19-share-study.page). We are also collaborating with Together for Short Lives, who will be sharing early findings from the study as part of Children’s Hospice Week on 22^nd to 28^th June 2020.

Family involvement is crucial to the success of this study. So far, members of our Family Advisory Board have helped to adapt the SHARE survey for parents of children with life-limiting conditions to make sure we are asking the right questions. They will also be involved in helping to interpret the study findings and identify key messages for policy and practice.