‘I thought it was just me’: mutual benefit from public involvement in research
Anna Spathis, Stephen Barclay
11 July 2018
Blog by Dr Anna Spathis, Consultant in Palliative Medicine, Addenbrooke’s Hospital, Associate Specialty Director in Palliative Medicine, School of Clinical Medicine and Dr Stephen Barclay, University Senior Lecturer in Palliative Care, Primary Care Unit, University of Cambridge.
Teenage and young adults with cancer have inspired and steered a novel research study to develop a treatment for cancer-related fatigue in young people. The Vice-Chancellor’s Public Engagement with Research Awards were set up to recognise and reward those at the University of Cambridge who undertake quality public engagement with research. In 2018, Dr Anna Spathis and Dr Stephen Barclay were one of four winners for their piece of work with teenagers and young people with cancer-related fatigue.
In this blog, Dr Spathis and Dr Barclay explain how their approach to public engagement developed and changed as the work progressed.
Fatigue is both the most common and the most distressing symptom experienced by teenagers and young adults treated for cancer. Almost every patient develops fatigue during cancer treatment, which can persist for years. It affects the mind as well as the body, with a devastating effect on quality of life.
There are no medicines that help fatigue. The best approaches in older adults are exercise, energy conservation and psychological treatments. However the specific needs of young cancer patients are not yet known.
Young people with cancer said fatigue management was their top priority
Young participants with cancer ranked ‘fatigue management’ as their top priority at a service review focus group, leading to the development of our research programme in 2013. We have worked closely with young cancer patients since then, to ensure the ongoing relevance of our research and to collaborate with them in the co-design of a non-drug fatigue intervention.
Early advice from the young people with cancer led to our focus on an individual, rather than a group-based intervention. Their involvement in the co-design of the intervention enabled us to reflect the unique needs of younger adults and teenagers. For example, ‘pacing’ of activities, avoiding cycles of intense activity followed by exhaustion, was less meaningful at this stage of life than for older adults. But App-facilitated mindfulness techniques were highly acceptable to young patients.
Insights into the vicious cycles that perpetuate fatigue
The engagement process led the research in an unanticipated direction. Participants’ insights into interactions between symptoms, emotions and behaviours led to a conceptual model of vicious cycles that perpetuate fatigue long-term. This model also has potential to enhance our understanding of fatigue from other causes.
‘I thought it was just me’
In response to young people wanting information from peer videos, rather than leaflets, three videos were published on Facebook, based on the research. They featured three young people treated for cancer, Faye, Ruth and Ellis, and achieved over 140,000 cumulative views.
I am really keen to see this. Sitting here having a little cry, as I thought it was just me and telling myself to get a grip”
– Facebook comment on a video output from this research
Our expectations of public involvement have changed
This public engagement work has far surpassed our expectations as a research team: we have realised afresh the huge value of the process in practice. Participants were very enthusiastic in their engagement with the co-design process, continuing the dialogue, in some instances, with unsolicited telephone and email contact. The sense of purpose and ‘ownership’ appeared to have therapeutic value in itself.
Feedback from the Facebook videos has highlighted a sense of relief that this debilitating symptom is being discussed openly and its negative impact validated.
I struggle with unpredictable fatigue. This awareness campaign is greatly appreciated. I hope that it creates awareness that we are not lazy, we are genuine”
– Facebook comment on a video output from this research
As clinical academics, we have learned much from this process. The young patients have challenged our preconceptions. They have fundamentally reshaped our understanding of the experience of fatigue, the potential mechanisms for perpetuation of the symptom and the features of age-appropriate intervention.
Given the evident benefits, we are committed to incorporating robust, multimodal public engagement in all of our future research. Our initial concerns about safeguarding young cancer patients were quickly dispelled. Indeed, we have reflected on the comparative ease of the process. Leadership appeared to move towards the young patients themselves, with the research team and charities providing facilitation and support. Our impression has been that successful public engagement becomes self-perpetuating, driven forward, in effect, by its own energy and momentum.
It has been a privilege to work alongside and learn from teenagers and young adults living with cancer-related fatigue.
The Fatigue Intervention Co-design Study (FICS) was funded by Macmillan Cancer Support. NIHR School for Primary Care Research, CLAHRC East of England and Cambridgeshire and Peterborough Clinical Commissioning Group (Research Capability Funding) also contributed funding to this programme of work.
Media queries: Lucy Lloyd, Communications, Primary Care Unit, University of Cambridge
How we engaged with young cancer patients for the Fatigue Intervention Co-design Study (FICS)
Initial research (2013-2015)
The two initial studies (systematic literature review and multicentre electronic survey) were developed with teenagers and young adults (TYA) treated for cancer. An advisory focus group of five patients met in person, and virtually as an innovative ‘e-focus group’. Eighteen patients from the TYA cancer service were consulted for advice about recruitment. One former patient has provided regular in-depth advice, as a dedicated proponent of this work from the outset, and has led the programme of Patient and Public Involvement (PPI).
Experience-based co-design study (2016-17)
Every step of this study has been an exercise in patient engagement. Patients worked closely with researchers in a multiphase, iterative process to develop the intervention.
- Thirteen TYA cancer patients and ten parents participated in individual semi-structured interviews and in two focus groups, from which the prototype intervention was developed;
- This intervention was then provided for participants;
- A second round of interviews sought feedback from participants to guide further development of the intervention; it is now ready for effectiveness testing in a controlled trial.
Sharing our research findings (2017-2018)
Participants in the co-design study requested peer videos to provide information about fatigue, ‘made by young people, for young people’. Macmillan Cancer Support generously funded professional production of three videos, underpinned by the research findings, and featuring three young people, Ruth, Ellis and Faye. The videos were launched on Facebook and led to over 140,000 cumulative views and 1,100 ‘likes’, with extensive shares and comments.
We have undertaken public dialogue with wider groups of young people with cancer, including Teenage Cancer Trust ‘Way Forward’ workshops with quizzes based on the research findings, and a keynote lecture at the ‘Shine Cancer Support’ national conference in London for over 100 young adults with cancer, in May 2018.