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.
Barriers to Research Access: Voices, Experiences, and Solutions (BRAVES) is a CLAHRC study focusing on improving access and participation in research for children and young people with LLC/LTI and their families.
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.
What triggers asthma symptoms?
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.
CLAHRC researchers based at Queen Mary University working to positively transform the health of young people have launched the My health in school initiative and website.
‘My Health in School’ aims to support young people’s health via school-based projects.
The My health in school team (below) also includes researchers and communications experts from Queen Mary University of London, and will initially focus will on asthma in young people aged 11-13, building on CLAHRC research and engagement with young people.
Previous collaborations with pupils, teachers and parents has spawned a number of innovations to engage and educate young people living with asthma and their peers. Outputs already developed include board and computer games, a drama being delivered in a number of schools and a short film.
The team is working with Professor Jonathan Grigg, who leads several studies about asthma and lung health in children and young people.
As well as support from NIHR CLAHRC North Thames other key collaborators, include:
- Centre of the Cell
- GLYPT (Greenwich and Lewisham Young People’s Theatre)
- Healthy London Partnership
- Asthma UK Centre for Applied Research
The project is recruiting secondary schools across London – schools that are interested are encouraged to get in touch with the team – find out more about what being involved means here.
Based on findings from research previously conducted by the school-based asthma project, part of our Child and Adolescent Health Theme, the team have worked with Greenwich & Lewisham Young People’s Theatre to develop a theatre production addressing asthma control. The theatre piece In Control has been performed in schools since June 2017, and was recently featured as part of the British Science Festival held in Brighton 5th – 9th September 2017.
Photo credit: Gerard Monaco
The aim of the play is to change the perception and image of asthma among young people, in order to help those with asthma feel supported and therefore better able to manage their condition. Written as a collaboration between the theatre and research teams, young people with asthma were involved to advise on the storylines and dialogue to make the play as real and as accessible as possible.
In Control follows a 15-year old girl, Jazz with asthma through a week of detention with two of her classmates. Usually confident and outgoing, Jazz hides that she has asthma and is reluctant to accept help when finding it difficult to breathe. After the play, the protagonist stays in character as the students participate in a discussion of the themes raised, facilitated by the other two actors. Engaging the school audiences through theatre gives a new angle from which to involve young people in thinking and talking about the challenges faced by those with asthma.
Dr Gioia Mosler from QMUL said: “It was an amazing experience seeing the direct emotional effect that a play can have on these school groups. We have been hugely encouraged by the initial reactions to this project and we are already starting to study how effective this kind of intervention can be to help young people deal with their asthma.”
Dr Jonathan Grigg, professor of paediatric respiratory medicine at QMUL and project lead added: “We must develop innovative ways of improving asthma outcomes in children and young people. Our work with Greenwich & Lewisham Young People’s Theatre has identified a new space where interventions can be delivered and tested outside the standard medical model.”
Photo credit: Tunde Euba
Dr Gioia Mosler, Outreach and Learning Manager for the school-based asthma project, and Tunde Euba, Arts Practitioner working with Greenwich & Lewisham Young People’s Theatre, have written about the development of In Control for The Lancet: Taking Control Through Drama
Also featured at the British Science Festival, was Asthma Dodge – a smartphone game developed in collaboration with the Centre of the Cell, a science education centre at Queen Mary University of London. In the game, the player takes the role of a young person with asthma. The aim is to run as fast as possible to reach the Centre of the Cell, dodging the asthma triggers along the way. Information about asthma is incorporated into the game, such as how asthma affects the airways, how different medication works, and the different types of triggers for asthma symptoms.
School-based Questionnaire on Asthma Control in London Secondary School Children
In a previous study from the school-based asthma project team, questionnaires completed by over 750 secondary school-aged students from schools in London revealed that only 54% of participants were managing their asthma well. Out of those whose asthma was not well controlled, almost half thought they had good asthma control. The school-based questionnaire also highlighted that students often feel uncomfortable about using an inhaler at school.
Our Behind the Jump video is impacting young people with asthma.
Our asthma schools study worked with Greenwich and Lewisham Young People’s Theatre (GLYPT) to produce the short asthma awareness film shot at the LEAP Parkour Park in Westminster, London.
A recent comment has high praise for the film
“The timing of the release of this video after the recent tragedy within our community felt particularly important. I’ve been asthmatic since I was three years old, and have a lung capacity so pitiful that it shocks and confuses doctors every time I get retested (“are you sure you did the test right??”) but when I’m out training Parkour I always feel my healthiest. I should be less lazy about using my inhalers, this was a good reminder. Great video.”