The Rollercoaster Journey: The search for light: a film that gives hope to young people with pain
The emotional highs and lows experienced by young people who have long-term pain are akin to being on a rollercoaster ride, according to short film that was launched on YouTube last month.
The imaginative approach was developed by a team led by physiotherapist Rhiannon Joslin, who holds a PhD and is based at the school of health sciences at the University of Southampton and at University Hospitals Sussex NHS Trust. The visual content, narrated by Immy, aged 14, was funded through a public engagement research project at the University of Southampton.
Dr Joslin told PhysioUpdate: 'A group of young people, including Immy, brought the metaphor of a rollercoaster journey to life by, for example, choosing the images and music to co-create this film.' The film is titled The Rollercoaster Journey: The search for light.
The rollercoaster metaphor emerged from an innovative study that Dr Joslin and two other health professionals conducted involving 21 young participants from two hospitals in England who had chronic, persistent pain.
More than 200 people have already watched the film, which is available at: https://www.youtube.com/watch?app=desktop&v=FlwBUZn_k8Q
The film’s objective is explained in the following way on the YouTube page. ‘Through their eyes, [the film] takes you on their rollercoaster journey from beginning to end, showing you their path to recovery. The film is based on the results of a research study that had ethics approval.’
Viewers are told that the notion of a ‘rollercoaster journey’ emerged from the visual images and written material used by the young people to depict what having pain meant to them ‘While each narrative was unique, “The rollercoaster journey” was a written metaphor that combined the stories of all those involved,’ the section concludes.
The film is linked to a qualitative study, titled Exploring the Outcomes That Matter Most to Young People Treated for Chronic Pain: A Qualitative Study, that was published by MDPI at the end of last year.
The paper was written by Dr Joslin, Dr Maggie Donovan-Hall from the University of Southampton, and Professor Lisa Roberts, from the therapy services department at University Hospital Southampton NHS Trust and the University of Southampton.
Healthcare professionals and researchers need to consider how they tailor treatment to the individual, how they show young people a link from where they are now to where they want to be [Rhiannon Joslin et al.]
'Twists and turns' on the journey
Twenty one young people (aged from 11 to 18 years) volunteered to take part in the study. They were recruited from physiotherapy departments, rheumatology clinics, child psychology services and tertiary multidisciplinary chronic pain services. The participants took part in semi-structured interviews and could choose be interviewed face-to-face at home or in hospital, or by telephone, online video or online messenger. A section at the end of the paper explains that young people tend to feel ‘alone and scared’ when they first experience chronic pain.
‘Along the journey, there are twists and turns, progressive climbs and fast descents. Sometimes, there are such highs, where the light is so bright that the end-point is crystal-clear and you can look at your world from a whole new perspective. Equally the rollercoaster can come crashing down and take you to dark places where the vision of an end-point gets smaller, blurred and then invisible.’
Gradually, however, the young person realises that they have begun to gain some control over their condition, the paper notes. ‘At the end of the rollercoaster, you are lighter but unsteady, as you regain your energy and thoughts, you smile realising how far you have come and what an achievement it has been. It has been a tough journey but one which has made you appreciate the freedom which you now have.’
'Being connected' is key
Dr Joslin and her colleagues stress that ‘being connected’ is a crucial step in the person’s recovery journey. ‘When developing a relationship with healthcare professionals, participants valued trust, time to develop the relationship, and familiarity with chronic pain,' they note.
‘Peer relationships were the only relationship that enabled the participant to feel included, accepted, and liked, so they no longer felt “alone”.
Dr Joslin and her colleagues add: 'Healthcare professionals and researchers need to consider how they tailor treatment to the individual, how they show young people a link from where they are now to where they want to be. Youths want to achieve the outcome "to believe I can get better", and healthcare professionals can facilitate this belief, but also take it away.
'Parents and healthcare professionals need to remember the young person is the author of their own story, they hold the pen, and they chose how their story will end.'
Clinical implications (a summary)
- context matters: the young people outlined nine physiotherapy treatments, five psychological approaches, 11 based on medication, four complementary therapies and one dietary treatment. ‘However, not a single treatment emerged as a key component to a positive or negative turning point. Conversely, the way in which the treatment was delivered did matter.’
- listen to the ‘language and expression’ used and ‘tailor the support’ offered: healthcare professionals should reflect on their own influence and monitor outcomes of the treatment experience. The young person’s mental health should be carefully monitored, especially when they appear to be on a ‘downward slope’
- a diagnosis is not a ‘tick-box’ exercise: receiving an explanation for their pain helped the youths to engage in a process of ‘sense-making’. A change in symptoms has the potential to send the young person into a ‘perfect storm’ of uncertainty, yet, if the explanation of the pain remains consistent and is repeated with certainty, the process of 'sense making' can continue 'towards a belief in recovery'
To see the open access MDPI article in full, visit: https://www.mdpi.com/2227-9067/8/12/1170
For more information about the film's funding source, visit: southampton.ac.uk/per/support/funding.pageAuthor: Ian A McMillan