The Infant Heart Study is a national study looking at follow up care for babies with congenital heart disease in the UK. The aim of the study is to improve the information and support available to families when they take their baby home from hospital after surgery. We are really keen to hear your views so that we can try to improve services for other children and their families in the future.

Who is organising and funding the research?

The research team are based at Great Ormond Street Hospital with collaborators at Birmingham Children’s Hospital, the Royal Brompton Hospital and the Children’s Heart Federation. The Children’s Heart Federation are helping to run an online forum as part of the study.  Professionals from all centres in the UK will be involved in the study, which has been funded by a grant from the National Institute of Health Research (ref no. 10/2002/29) and has been reviewed by NRES Committee London – Central (reference no. 12/LO/1398).

How do I get involved?

We will be running a discussion group on Facebook asking questions about the support you received when you took your baby home after heart surgery. We are interested to hear from people (parents, siblings, relatives, friends and others) with a range of experiences of caring for a child at home after heart surgery, but we are particularly interested in hearing from families of babies who had surgery before their first birthday.

 How will the information be used?

The results of the study will be published and shared with professionals at conferences and in journals. We will also make a summary of the findings available on the CHF website.  We may use direct quotes in an anonymised form when reporting the results of the study in publications and presentations.

The discussion forum is a closed group so only other forum members and staff from the Children’s Heart Federation will be able to identify you from your posts. The Children’s Heart Federation will be responsible for running the discussion forum and will remove all names from forum posts before sharing this information with the research team at Great Ormond Street Hospital. The research team will not have any personal information about you other than the information you give when you sign up to the discussion (age, sex, location and role e.g. parent, relative, friend).

What will happen if I join the discussion forum?

If you would like to join the discussion forum on Facebook you will need to have a Facebook account. When you request to join the discussion forum you will be asked to give some basic information about yourself (your age, sex, region and role e.g. parent, relative, sibling, friend). You will then be given access to the group and can begin posting in the discussion. There will be some specific questions posted for you to answer but we would also be interested in hearing your stories.

The forum is now closed

We are interested in hearing from people (parents, siblings, relatives, friends and others) with a range of experiences of caring for a child at home after heart surgery, but we are particularly interested in hearing from families of babies who had surgery before their first birthday.

We should note that it is possible that important information relevant to this topic could come from bereaved parents whose child did not recover after their surgery.  As such, some discussions may touch upon sensitive issues for some families. If you are affected by any of the discussions on the forum and would like to talk to someone you can contact the Children’s Heart Federation helpline 0808 808 5000 who will also be able to direct you to further sources of support if you wish.

What if I change my mind and want to leave the discussion?

You can leave the discussion forum at any time. If you wish your posts to be removed from the forum and excluded from the study you can do this by contacting a forum administrator.

Who can I contact if I want more information?

If you would like more information or would like to talk to someone about the study you can email the research team at Infant.Heart@gosh.nhs.uk or call: 020 7813 8378.