CHF are supporting research by Prof Priscilla Alderson and Dr Katy Sutcliffe from University College London (UCL), focusing on children’s and parents’ informed and willing consent to heart surgery.

We are planning research with families and healthcare staff about how young patients aged 6-15 years are informed and involved in decisions about their heart surgery.

Our main questions so far are:

• What works well with involving young patients in decisions before surgery?
• How are their views, questions and concerns respected?
• How do healthcare staff find out how much each young patient wants to be involved or not involved in decision-making?
• How might the staff improve their information-giving, listening and support to children and to parents?
• At what age was, or will, the young patient concerned be able to understand and give consent as competently as the parents can?

Are there other questions we could be asking?

We hope that parents and young patients aged up to 15 years who have had heart surgery within the past two years will send in the questions they would like us to ask.

At this stage, we are not asking for personal details or names.

To respect your privacy, the Children’s Heart Federation has agreed to receive your views at info@chfed.org.uk and to send them on to Prof Priscilla Alderson and Dr Katy Sutcliffe after removing your names.

Please send your ideas before 18 October 2016.

Prof Alderson and Dr Sutcliffe are social researchers and have talked with numerous children and young people having major treatment and their parents. Both researchers always aim to respect views and privacy to try to find out what participants really think, and also respect individuals’ rights not to talk to them if they so wish.

Thank you for supporting this timely research.