What is preventing research with children and young people (CYP) with life-limiting conditions and life-threatening illnesses (LLC/LTI)?
Barriers to Research Access: Voices, Experiences and Solutions, or BRAVES is a programme of research aiming to explore the barriers to conducting research and some possible solutions
The team recently presented two posters at the 17th World Congress of the European Association for Palliative Care (EAPC)
The first gives an overview of the whole project
This poster was recognised as 1 of 3 best/highest scoring poster abstracts in the Palliative care in Children and Adolescentscategory
The second focuses on work with research ethics committees who provide approval for work to take place with this vulnerable group of patients
Helen is a consultant in public health medicine and a health services researcher. She is a member of the CLAHRC research partnership team, and Deputy Director of the CLAHRC Academy. Her research uses qualitative and quantitative methods to evaluate health care and public health services.
Antonio holds a BSc in Psychology and an MSc in Research Methods and Implementation in Psychology and Health, both from the University of Granada, Spain. He has also been awarded a Ph.D. from the University of Granada, for his work in the Andalusian School of Public Health. During this time, he was part of several research projects, mostly focused on health inequalities and health systems, prior to joining UCL. Antonio has particular interest in research methods in health, mostly systematic reviews and meta-analysis.
Helen is a consultant in public health medicine and a health services researcher. She is a member of the CLAHRC research partnership team, and Deputy Director of the CLAHRC Academy. Her research uses qualitative and quantitative methods to evaluate health care and public health services.
Within the UK, 32 out of every 10,000 children are living with a life-limiting condition or life-threatening illness (LLC/ LTI).
Research, from genetic studies to drug trials is vital to improving care for these children and their families, but the inclusion of this vulnerable population into research studies has been difficult.
A new BITE – a postcard “need to know” summary of our published research – shares the perceptions of clinicians and research leaders on their perceptions of the barriers preventing children and their families becoming involved in research.
The BRAVES team surveyed palliative care clinicians, often “gatekeepers” to children and their families getting involved in research asking them
‘In your experience, what have you found to be the biggest barriers to palliative care research with children?’
We also consulted Chief Investigators (CIs) – leaders of NIHR research studies involving CYP with LLC/LTI and their families. CI’s were invited to complete an anonymous, web-based questionnaire and three key barriers to research were emerged, alongside four potential solutions.
The Mayor of London, Sadiq Khan has launched a programme to improve the self-management of asthma by school children in the Capital. My Asthma in School was developed by CLAHRC researchers based at the Blizard Institute within Queen Mary University of London.
The programme uses educational workshops and theatre performance to improve asthma control and peer support for asthma in London secondary school.
Asthma affects approximately one in 11 children and young people in the UK; and young people with asthma have higher rates of school absences and visits to their doctor or the hospital. According to the data collected for the study, nearly half of young people (aged 11-18 years) with asthma did not have control over their condition.
Dr Gioia Mosler, Outreach and Learning Manager for the ‘My asthma in school project’, said:
“The number of deaths from asthma in the UK rank among the highest in the EU. Many of these deaths could be prevented with better self-management.”
She added: “Improving the ability and motivation to self-manage asthma gives many young asthma sufferers the opportunity to improve their asthma control. As a result they would suffer less from common symptoms like coughing at night or breathlessness.”
My asthma in School is one of the first school-based interventions for asthma self-management in the UK. Similar trials have been undertaken outside the UK, however, given that the health and education systems differ, results from these interventions may not be transferable to a UK setting.
The programme has been approved and supported by Sadiq Khan, Mayor of London. Mayor Khan was himself diagnosed with the conditon as an adult – which he attributes to London’s poor air quality and pollution levels.
He said: “The Greater London Authority and I believe that the ‘My Asthma in School’ programme is likely to promote the necessary education young people require to effectively self-manage their asthma.”
He added: “I encourage all London secondary schools to take part in this programme.”
Using behavioural change theories as a framework, researchers have developed a variety of engaging and entertaining media, such as apps, videos, and interactive games.
The intervention includes an interactive theatre performance (below), lasting approximately two hours, to help raise awareness of asthma among peers. The performance has been developed with partners at Greenwich and Lewisham Young People’s Theatre.
Dr Mosler added: “The theatre intervention addresses asthma from a new angle, focusing on peer awareness and support around young people with asthma. The questionnaire data we collected during phase one showed many barriers related to a perceived stigma around asthma. The theatre intervention addresses stigma around asthma in the peer group.”
The intervention will be trialled in London during the next few months. Given a positive result of this intervention it could be adopted as a wider programme to improve asthma in young people.
The programme is run as part of the My Health in School initiative which aims to improve life and health of young people at school. The team works with Professor Jonathan Grigg, who leads several studies about asthma and lung health in children and young people.
Can you identify celebrities who live with the condition?
How much lung capacity do you have?
These were just some of the questions we asked visitors to our stall at the 2018 Barts and Queen Mary Science Festival held at Queen Mary University of London’s Mile End campus on 20 June.
The CLAHRC was represented by the My Asthma in School project team at the event aimed at secondary schools and young people interested in a career in science and medicine.
We took the chance to give visitors information on symptoms and managing the condition in schools, and raising awareness among young people they can better understand and support fellow pupils with asthma.
They could also test their lung capacity and put their results on a peak flow rate chart to see how they rated against other young people (below). The team is looking for schools to take part in their work. Signing up your school is quick and easy and will help your school support & empower young people with asthma.
The Exhibitors at the festival provided hands on activities to encourage students to learn more about careers in science.
Now in its eighth year, the 2018 festival was supported by the NIHR Biomedical Research Centre (BRC) at Barts Health NHS Trust and Queen Mary University of London, and Trials Connect.
Thank you to the team and for the invite from Barts and QMUL.
