Adults and Parents wanted for a study looking into complications following heart surgery

Would you like to take part in a study and help us to better understand what impact heart surgery has had on you and  your family?

Study is closed

Sign up for focus group now
Join Facebook group discussion now

What is the aim of this study?

The aim of this study is to better understand how heart surgery affects children and their families in the long term. We know that unfortunately some children who undergo heart surgery develop complications during or after the operation, some of which can be serious and some of which are relatively minor. We would like to find out which complications are most important to parents of children with heart disease.

Before you decide whether or not to take part it is important for you to understand what this study is about and what taking part will mean for you. Please take time to read the following information carefully and discuss it with others if you wish. Please take time to decide whether or not you wish to take part. Ask us if there is anything that is not clear.

For further information on this study visit the Great Ormond Street Hospital website

Why have I been invited to take part?

We are inviting you to take part in this study because we understand from the Children’s Heart Federation that you are interested in this topic. You will have been given this information by a Children’s Heart Federation staff member who is a co-researcher on the study.

How do I get involved?

You can take part by joining a Focus group meeting, or by joining a private Facebook online forum.

1. FOCUS GROUP MEETINGS:

The focus group meetings will take part in:

  • Glasgow: Saturday the 12th of April 2014, 11:30am -1:30pm, Mercure Hotel

If you would like to take part in a focus group meeting contact the Children’s Heart Federation at on 020 7422 0630 or email info@chfed.org.uk

What will happen if I take part in the focus group?

If you take part, you will take part in a discussion session with around ten other parents called a focus group. The researcher will tape the discussion then transcribe it later before destroying the tape. The written review will be coded and anonymised. Information will be kept confidential. It will not be kept alongside names or identifying details and any quotes or statements will not be attributed to individuals.

We would ask you to treat anything you hear discussed in the group by others as confidential.

Do I have to take part?

No, you do not have to take part. You can choose whether you want to take part. If your child is aged between 15 and 18 years of age we may also have invited them to take part. If they choose not to participate you are still able to participate if you want to but your child’s decision about their own participation will take priority and we will not involve them in the study any further.

2. FACEBOOK FORUM:

We will also be running a private discussion group on Facebook asking you to tell us about any complications that your family or your child has encountered following your child’s heart surgery. We are interested to hear about any complications associated with the heart surgery, ranging from minor to serious complications. Most importantly, we want to find out which complications have affected you or your child the most.

To join the facebook group, you will need to have a Facebook account and because of privacy settings there are a few steps you need to take before you can join the group. Remember all personal information will not be passed on to anyone else.

Join now

  1. Sign into Facebook.
  2. Add Samantha at CHF as a friend.

  3. Once you are friends (or if you are already her friend), send Samantha at CHF a message with the following details that are required for you to take part in the study:

• Name
• Gender
• Age
• Ethnicity (e.g. white British etc)
• Relationship to heart patient (e.g. mother, carer)
• Postcode

Once Samantha at CHF has received your details, she will invite you to join the private focus group.

How does the Facebook forum work?

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. 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). Please note that no names will be given out to anyone.

What will happen if join the Facebook 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.

Who is the Facebook forum open to?

We would like to hear from parents, siblings, relatives, friends and others who have experienced taking care of a child after heart surgery.

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 or email info@chfed.org.uk who will also be able to direct you to further sources of support if you wish. If you would like to join the discussion on Facebook please click here.

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.

FURTHER IMPORTANT INFORMATION:

How will the information be used?

The findings from this study will be used to develop better ways of providing parents with information about the risks of different heart operations and the important complications that may happen. Results will be presented through our website, in the media and in scientific reports and papers. We may use direct quotes in an anonymised form when reporting the results of the study in publications and presentations. Results will be presented through our website, in the media and in scientific reports and papers. We may use direct quotes in an anonymised form when reporting the results of the study in publications and presentations.

Who is organising and funding the research?

The study team are based at Great Ormond Street Hospital. Evelina Children’s Hospital, Bristol Children’s Hospital, Royal Hospital for Sick Children, Glasgow and Birmingham Children’s Hospital are also collaborating on the study, together with researchers from University College, London and the Children’s Heart Federation. The study has been funded by a grant from the National Institute of Health Research (ref no.12/5005/06).

Who has reviewed the study?

This study has been reviewed by National Research Ethics Service (NRES) London – City Road and Hampstead Number 13/LO/1442.

What are the possible benefits of taking part?

There is no direct benefit to you of taking part but we hope that the results from this study will be used to develop better ways of providing parents with information about the risks of different heart operations and the important complications that may happen.

What are the possible disadvantages and risks of taking part?

There are no real risks or disadvantages to taking part. However, if you should feel uncomfortable during the session or do not want to continue taking part you are free to stop and leave at any time. We can also help to cover childcare and travel costs. Please contact info@chfed.org.uk if you have questions about reimbursement costs.

What if there is a problem?

If you have concerns about the study, then you can speak or write to Dr Katherine Brown, details below. If you wish to speak with someone independent of the study please contact the Patient Advocate and Liaison Service (PALS), Great Ormond Street Hospital, telephone 0207 405 9200 extension 7862 for support and advice.

What if I don’t want to carry on with the study (I want to withdraw)?

If you choose to take part and then decide you would prefer to withdraw, then you can tell the research team. You will not be asked to explain why and you will not have to give us any more information. If you have already been involved in an earlier stage of the project and do not wish us to use the information, we will destroy the information.

Will my General Practitioner (GP) know I am taking part?

We do not propose to inform your GP about your participation.

Will my taking part in the study be kept confidential?

Your identity and participation in the study will be kept confidential. Your contact details will be held securely by the Children’s Heart Federation and will not be made available to members of the study team.

What will happen to the results of the research study?

The findings from this study will be used to develop better ways of providing parents with information about the risks of different heart operations and the important complications that may happen. Results will be presented in the media, through the website of the Children’s Heart Federation and in scientific reports and papers. A lay summary of the research findings will be sent to all the participants who wish to receive this at the end of the study.

Further information and contact details

If you would like to have further information about the study or wish to write or speak to someone about it, then please contact us:

Dr Katherine Brown, Consultant Paediatric Intensivist, Great Ormond Street Hospital NHS Foundation Trust, Great Ormond Street, London WC1N 3JH, Telephone number 0207 829 8894 or email: morbiditystudy@gosh.nhs.uk

What to do now

Please read through the information and talk about the study with family members, friends or colleagues if you wish. It is your choice whether to take part and you may contact us to ask more questions before deciding.

If you want to take part…

If you wish to take part, then please contact the Children’s Heart Federation at on 020 7422 0630 or email info@chfed.org.uk We will let you know when the discussion session is being held and where.

If you do not want to take part…

If you want to tell us that you do not want to take part, then you can contact us using the details above.

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 Children’s Heart Federation at info@chfed.co.uk or call the research team on 0207 829 8894 or email them at morbiditystudy@gosh.nhs.uk

Thank you for taking the time to read this information