This research project looked at the information and care for children and young people in two London heart surgery departments.
We asked about the ages when children begin to be informed, and when their consent to non-urgent heart surgery, or their refusal, begins to be respected.
The project is funded by The British Heart Foundation.
To report how children, young people and their parents are informed and involved in decisions about non-urgent heart surgery in two London hospitals.
- Study timeline
We applied for funds to the British Heart Foundation in 2016, with a revised second application in 2017
- British Heart Foundation awarded the grant.
- We started applying to the UCL ethics sponsor and for NHS HRA research ethics committee approvals.
- We liaised with two paediatric cardiologists who each kindly agreed to be the Principal Investigator for this project in their hospital, and who supported the project through the delays.
- Rosa Mendizabal was appointed and the funded research started.
- After many duplications and delays, NHS Health Research Authority approval was granted (19/LO/0073).
- UCL Institute of Education, approval was granted (REC1188).
- HRA-Confidentiality Advisory Group approval was granted (19/CAG/0148).
- We obtained access permission in each hospital from Heads of Paediatric Cardiology Departments, Human Resources, Occupational Health and other management.
- We started conducting observations and interviews in the two hospitals.
- We had to stop visiting the hospitals and all the observations because of COVID-19. The research involved only children having elective operations, and these were all cancelled. Interviews continued by phone and Skype.
- Because of difficulties accessing families to interview we started planning an online survey of children and parents involving members of two children’s heart charities.
- With the help of Little Hearts Matter, ECHO – Evelina Children’s Heart Organisation, and the Children’s Heart Federation we held an online survey and they organised two discussion groups online.
- End of funded research. We continue to write papers for journals.
- Research methods
This multi-method research involved reviews of the law, ethics and healthcare literature on consent to children’s major treatment. We observed wards, clinics and interdisciplinary meetings in two paediatric cardiology departments from October 2019.
Participants and research methods
Senior hospital staff and related experts
We audio-recorded semi-structured interviews with a purposive sample of 45 senior hospital staff and related experts, with their informed consent, from November 2019 to February 2020. Then because of COVID-19, contact was by phone up to April 2021.
Some of the 45 interviewees had two or more present or previous roles. They included six nurses, 26 consultants (congenital heart disease cardiologists, surgeons, anaesthetists, paediatricians, intensivists and a palliative care specialist), two play specialists, four chaplains, five psychologists, one transplant team social worker, four children’s heart charity information staff, three lawyers and one mediator. Eight of these professionals were also members of ethics committees and four were members of a hospital directorate.
We planned to interview 60 children aged 6 to 15 years having elective surgery, and their parents. Most surgery is performed on babies and young children, with relatively few operations after 5 years and, after February 2020 because of COVID-19, elective surgery was cancelled and our observations ended.
Sixteen families agreed to take part. With their informed consent they were observed before and after the non-urgent heart surgery, and interviewed shortly after the operation and some months later. Four families were observed but interviews could not be arranged.
Ten mothers, two fathers and one grandmother/guardian gave interviews, but only six children did so. Two of them, aged 8 and 16, had learning difficulties, as did three other of the ten children who did not give interviews. Children chose their own research names.
During the pandemic, two paediatric cardiologists supported the research by inviting parents whose child had surgery within the past two years to contact us from home, but only one parent did so. Stress and anxiety during the pandemic are increased for families when a child has a heart condition.
Three children’s heart charities, Little Hearts Matter, ECHO and the Children’s Heart Federation, shared our online survey with their members, 15 children and young people aged 6-17, and 23 parents replied.
Two of the charities worked with small groups, one by phone the other by email, asking then some of our interview questions: one involved nine children aged six to 13 with help from their parents.
The other involved seven young people aged 14 to 17. Encrypted interview audio-recordings were professionally transcribed.
Research methods also included multidisciplinary advisory group meetings and regular research team meetings on analysing data and writing papers.
- Associate Professor Katy Sutcliffe, IOE
- Professor Priscilla Alderson, IOE
- Dr Rosa Mendizabal, IOE
- Hannah Bellsham-Revell, Paediatric Cardiologist and Principal Investigator, Evelina London Children's Hospital and Guy's and St Thomas' NHS Foundation Trust
- Nathalie Dedieu, Paediatric Cardiologist and Principal Investigator, Great Ormond Street Hospital for Children.
- Hannah Bellsham-Revell, Paediatric Cardiologist and Principal Investigator, Evelina London Children's Hospital and Guy's and St Thomas'
- Professor Deborah Bowman, Emeritus Professor of Bioethics and Clinical Ethics and Medical Law, St George's, University of London
- Dr Joe Brierley, Children’s Intensive Care Consultant with a special interest in Medical Ethics and Law, Great Ormond Street Hospital for Children
- Nathalie Dedieu, Paediatric Cardiologist and Principal Investigator, Great Ormond Street Hospital for Children
- Elizabeth King, Senior Lecturer in Children's Nursing, London South Bank University
- Professor Sir Jonathan Montgomery, Professor of Healthcare Law, University College London, Chair of the Oxford University Hospitals NHS Foundation Trust
- Professor Judith Trowell, Child and Adolescent Psychoanalyst and Psychotherapist, Tavistock Clinic and the University of Worcester.
More papers on the research are being written and sent to journals. When they are published they will be added to the reports list.
- Alderson, Priscilla. (2023) Bodily integrity and autonomy of the youngest children and consent to their healthcare. Clinical Ethics.
- Priscilla Alderson. 2023. Can young children give or withhold consent to heart surgery? Obstacles to innovative research. Sociology Lens Insights.
- Priscilla Alderson, Hannah Bellsham-Revell, Liz King, Trisha Vigneswaran, Jo Wray. (2023) Children's ages of consent to non-urgent heart surgery: The views of two paediatric cardiology teams. Children & Society.
- Alderson P, Bellsham-Revell H, Dedieu N, Mendizabal R, Sutcliffe K. (2022) Children’s understanding and consent to heart surgery: Multidisciplinary teamwork and moral experiences. Moral experience special issue Journal of Child Health & Care.
- Alderson, P., Lotteria, A., Cohen, M., et al. (2022) The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study, Journal of Cardiothoracic Surgery, gold open access
- Alderson, P., Bellsham-Revell, H., Brierley, J., et al. (2022) Children's informed, signified and voluntary consent to heart surgery: Professionals’ practical perspectives, Nursing Ethics, gold open access
- Alderson, P., Bowman, D., Brierley, J., et al. (2022) Living bioethics and children’s consent to heart surgery, Clinical Ethics, gold open access.
- Alderson, P., Bowman, D., Brierley, J., Elliott, MJ., Mendizabal, R., Montgomery, J., Sutcliffe, K and Wellesley, H. (2021). Living bioethics, clinical ethics committees and children’s consent to heart surgery. Clinical Ethics, open access
- Alderson, P., Sutcliffe, K. and Mendizabal, R. (2020). A critical realist analysis of consent to surgery for children, human nature and dialectic: the pulse of freedom, Journal of Critical Realism
- Alderson, P., Mendizabal. R and Sutcliffe, K. (2021). Children’s and Parents’ Consent to Heart Surgery. End of project report to the British Heart Foundation. July.
- Alderson, P., Mendizabal. R and Sutcliffe, K. (2021). End of project report to 45 professionals who were interviewed
- Alderson, P and Sutcliffe, K. (2017). Research protocol in application to the British Heart Foundation.
- Alderson, P., Sutcliffe, K. and Mendizabal, R. (2021). Truth and trust in consent to surgery, Qualitative Health Research Network, March
- Alderson, P., Sutcliffe, K and Mendizabal, R. (2021). Children's informed, signified and voluntary consent to heart surgery. International Association of Critical Realism annual conference, Rhodes University, South Africa. September.
- Mendizabal. R., Sutcliffe, K and Alderson, P. (2019). The Future of Social Research about Paediatric Cardiology Services in the UK, Poster to Qualitative Health Research Network conference at UCL, April
- Alderson, P., Sutcliffe, K. and Mendizabal, R. (2019). Dialectic and informed and voluntary consent: the pulse of freedom. Lecture to International Association of Critical Realism annual conference, University of Southampton, August
- Mendizabal. R., Sutcliffe, K. and Alderson, P. (2019). Informed consent to paediatric cardiac surgery. What really matters to children, young people and their families? Medical Sociology Annual Conference, York, September.