Children’s and parents’ consent to heart surgery

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.

Aim

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

2016/2017

We applied for funds to the British Heart Foundation in 2016, with a revised second application in 2017

2018

April 2018

• British Heart Foundation awarded the grant.
• We started applying to the UCL ethics sponsor and for NHS HRA research ethics committee approvals. 

Summer 2018

• 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. 

November 2018

• Rosa Mendizabal was appointed and the funded research started.

2019

February 2019

• After many duplications and delays, NHS Health Research Authority approval was granted (19/LO/0073).

March 2019

• UCL Institute of Education, approval was granted (REC1188). 

September 2019

• 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.

October 2019

• We started conducting observations and interviews in the two hospitals. 

2020

March 2020

• 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.

September 2020

• 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. 

Spring 2020

• 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.

2021

May 2021

• 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.

Families

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.

Charity members

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.

Further methods

Research methods also included multidisciplinary advisory group meetings and regular research team meetings on analysing data and writing papers.

Team

Researchers

• 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.

Advisers

• 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.

Outputs

More papers on the research are being written and sent to journals. When they are published they will be added to the reports list.

Related links

• Social Science Research Unit (SSRU)