Prof. Stephen Stansfeld is Professor of Psychiatry at QMUL. His research involves longitudinal studies of risk and protective factors for mental health in adolescence, life course studies of social and environmental risk factors and intervention studies on work and mental health. He is Co-Principal Investigator of ORiEL Study, a NIHR-funded cluster randomised trial of the impact of the regeneration surrounding the Olympics on children’s wellbeing and physical activity.
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.”
Palliative care for children and young people with life-limiting conditions and life-threatening illnesses is a relatively new discipline, and one where current practice in services has developed beyond the evidence base available. Barriers to conducting research in this area are numerous, and span the entire length of the research process.
CLAHRC researchers from the BRAVES project, based at the Louis Dundas Centre, are working to identify these barriers to recruiting children with life-limiting conditions to research, and to develop solutions.
“Establishing robust evidence is going to require concerted effort on everyone’s part: clinicians, parents, patients, and researchers.”
Professor Myra Bluebond-Langner, principal investigator on the BRAVES project, has recently recorded a podcast with the journal Palliative Medicine, discussing the need for an increased understanding of barriers to research in paediatric palliative care, findings from the project so far, and outlining the future research planned by the team.
Initial findings from the study, and previous work at the Louis Dundas Centre, have suggested that fundamental barriers exist at both the individual level, e.g. clinicians’ attitudes to involving young people in research, as well as at the institutional level, e.g. ethics committees and resource constraints, even though children and young people want to participate in research.
“So, why, if we no longer accept paternalism in clinical practice, are we willing to accept it, indeed demur to it, in research practice?
The overall goal of the BRAVES project is to develop guidance based on the experience of all stakeholders, which in turn will help to develop the evidence base in the field of paediatric palliative care.
Based on the findings outlined in the podcast, the research team has since conducted a study investigating the experiences and difficulties of chief investigators recruiting children and young people with life-limiting conditions and life-threatening illnesses to research. The findings from this study are expected to be published soon. The next step for the CLAHRC researchers is to analyse data collected from a nationwide research groups’ applications to Research Ethics Committees, and to interview members of these committees to develop further insights.
Click here to read the journal article on which this podcast is based.
The London Evening Standard features CLAHRC research in a story on the impact of air pollution on the capital’s younger asthma sufferers.
Our newly published research highlights poor asthma control and knowledge among London secondary school pupils and is referenced in the piece, which also includes contributions from CLAHRC researchers Professor Jonathan Grigg and Kate Harris.
The paper has campaigned extensively on the quality of London’s air, and the health impact on young and developing lungs. Poor asthma control, as highlighted in our work, can make things worse for those already living with respiratory conditions.
Professor Jonathan Grigg, CLAHRC child health theme and Principal Investigator on the study runs a severe asthma clinic at the Royal London hospital, said: “If you have asthma and it is not well-controlled, you are going to be more likely to suffer from these days of high pollution.If you have poor control, you run a risk of having a severe episode. The number of children who die is very small, but we are not really treating asthma as seriously as we should. In other countries, they say, ‘If you have got asthma, make sure you take your medication on the next few days’. That is what I would do. I would say, ‘There is an air pollution event. Make sure you take it.’ ”
Another researcher on the project Katherine Harris was quoted in the ES story, saying it was the first childhood asthma study carried out in schools: “We know from previous work about asthma in children that there were high levels of hospitalisation and asthma-related deaths were higher than Europe.One reason could be due to poor levels of asthma control in children. What we concluded is that there is a prevalence of poor control in children. There are also low levels of knowledge. A lot of children don’t understand what their medication does or how it was helping them.”