YaH is pleased to have taken part in the research of this newly published national strategy which addresses the priorities for research on children and adults with congenital heart disease 

Please read in full here 

Are you a woman with congenital heart disease who is or has been pregnant? Would you like to help shape future research on mental health in pregnancy?

A team of researchers at Warwick Medical School and the University of Birmingham is developing a new research agenda to better understand the unique mental health experiences and needs of pregnant women and new mums with congenital heart disease. Our study uses a participatory approach, meaning that if you take part, you will actively collaborate with the research team to set research priorities, create research publications, and advise on next steps for future research. Participating in the study will include taking part in three group discussions (two hours each) and reviewing documents, and you will be paid for your time.

If you’re 18 or older, and have experienced both congenital heart disease and pregnancy, you may be eligible to take part. If you’d like to know more about this study and what participation would involve, please contact the lead researcher, Dr Karin Eli at karin.eli@warwick.ac.uk.



Understanding parents’ perspectives on research in children’s heart surgery

Mr Nigel Drury, Consultant in Paediatric Cardiac Surgery, Birmingham Children’s Hospital

Clinical trials are the best way to test whether one treatment is better than another and improve patient care. However, little is known about the views and attitudes of parents on their child’s involvement in research, and specifically clinical trials, alongside their heart surgery. So with support from Young at Heart, and funded by Birmingham Children’s Hospital Charity, we conducted a study to interview the parents of children approached to participate in the BRICC trial, a clinical trial which was underway in Birmingham, to explore their perspectives on research involving their child, with the aim to better understand the factors that influence their decision on whether to participate.

In May 2017, eight parents kindly gave up their Saturday morning to take part in a focus group in which we explored their opinions, beliefs, concerns, and expectations of research in children’s heart surgery, and we used this information to shape the topics and questions for the interviews. Parents also reviewed the information leaflet for the study to make sure that it was clear and easy to read.

Between September 2017 and June 2019, with consent, we interviewed 26 parents who had been approached for their child to take part in the trial, including 24 who had agreed to their child’s participation and two who had declined. Interviews were conducted after surgery, either just before discharge or in the following few weeks, in person or by telephone. The recordings were analysed by the research team and common themes identified. We found that parents’ decision-making about whether their child should participate in cardiac surgical research was influenced by four key factors:

- Potential risks: The most important factor was any potential risk of harm from the research, as parents’ primary concern was to protect their child. The trial involved additional procedures, such as biopsies during surgery and extra blood samples, but most parents did not mind these ‘extra’ tests as long as they could be taken from lines that were already in, so did not need any additional needles.

- Potential benefit and altruism for the ‘cardiac community’: Parents recognised that the research may have benefits for their own child, now or in the future, and that it may also help other children undergoing surgery. They felt a strong sense of community, and many were aware that just as their child was benefitting from previous studies, by taking part in research, they could help to improve outcomes for future families.

- Information, understanding and timing of approach: Parents thought that the trial information sheet was well written, with about the right amount of information – also, thanks to Young at Heart parents! Most parents had received the information in the post and felt that this gave them more time to think about it, discuss with family members, and ask questions in clinic or on admission to the ward. However, the main reason given by parents who declined the trial was that they felt overwhelmed by their situation and saw the research as an additional burden on their time, energy, and emotions.

- Trust in the clinical team: Families had a high level of confidence and trust in the BCH team and the interviews were full of positivity about their surgeon, the wider clinical team, and the NHS. Parents also preferred for a trial to be explained by their doctor or surgeon, to reassure them that it was appropriate for their child.

By understanding parents’ perspectives on clinical trials, such as the issues which influence their decision-making, researchers can design better studies. We are working with colleagues from across the country to conduct bigger and better clinical trials in children’s heart surgery over the next few years, to answer some of the key questions and improve outcomes for children and their families. We are already using the findings from this study to improve how we design and conduct future trials.

We are most grateful to all of the parents who took part in the interviews and focus group. The BRICC trial completed recruitment in December 2020 and is currently being analysed. We hope to share the results of the trial later this year.

The research team also includes Mr Timothy Jones (Consultant Paediatric Cardiac Surgeon) and Dr Julie Menzies (Paediatric Intensive Care) at BCH, Dr Anna Lavis, University of Birmingham, and Dr Clare Taylor, University of Oxford.

The full results of the study are freely available at: https://bmjopen.bmj.com/content/11/2/e044896

Have YOUR say on the future of Congenital Heart Disease research!

A national study has been launched to identify and prioritise the areas of future research in congenital heart disease that are most important to patients, their families, and healthcare professionals. YOUNG AT HEART are supporting this project to help ensure that all voices are heard. This is your chance to have your say – so we want to hear from you!

What questions would you like to see answered by research, relating to the diagnosis, treatment, or outcomes of congenital heart disease?

The survey is now open and can be completed online at: https://redcap.link/congenitalPSP or is available to download as a PDF in English, Welsh, Polish, Bengali, Urdu, Gujarati, or Hindi.

It should take no more than 10 minutes to complete and with your help, the findings will be used to:

• Develop a national strategy, to address the issues that matter most
• Guide the design of future studies, aimed at improving the clinical care and day-to-day lives of children and adults born with congenital heart disease
• 
  

and so will have a major impact on the direction of congenital heart disease research in the UK!

This study is funded by George Davies, the high street fashion entrepreneur behind brands such as Next, Per Una, and George at Asda, through a generous donation to the Birmingham Children’s Hospital Charity, as his granddaughter has previously undergone complex cardiac surgery.

For more information about the Congenital Heart Disease Priority Setting Partnership, please visit: www.birmingham.ac.uk/congenital-psp

Email: congenitalPSP@contacts.bham.ac.uk

twitter: @congenitalPSP

Facebook: congenitalPSP