Empowering people to take control of their own health and wellbeing lies at the heart of self-management. It is even more important in the face of long-term illness. The ongoing COVID-19 pandemic has brought a reduction in cancer services. So, it is clear to see that digital peer support is ever more essential for connecting people with cancer. A digital self-management programme for people with cancer is helping to do just that.
The dawn of HOPE
Professor Andy Turner has a long career in self-management behind him. He is passionate about helping people with long-term conditions to improve their own quality of life. Around a decade ago, Professor Turner and his colleagues started working with cancer survivors, Macmillan Cancer Support, clinicians and other experts. They co-developed a self-management programme to equip people with cancer with skills and techniques to help them manage their own condition. The programme is called Help to Overcome Problems Effectively, with the fitting acronym, HOPE. Professor Turner is co-founder of Hope For The Community (H4C) Community Interest Company (CIC), home of the HOPE programme.
The HOPE programme aims to foster positive emotions, stimulate positive functioning, and reduce depressive symptoms in people living with cancer. HOPE is based on the principles of positive psychology, acceptance commitment therapy and cognitive behavioural therapy. It mainly focuses on positive experiences, strengths, and personal competencies, as well as mental health issues such as anxiety and depression. Evidence-based exercises centre on hope, gratitude, acceptance, self-compassion and goal-setting. These combined features help group members feel grounded, positive and looking to the future.
Research studies gathering pre- and post-programme health and wellbeing data from HOPE participants have shown promising positive results. After the HOPE programme, most participants report reduced anxiety and depressive symptoms and increased positive mental wellbeing.
The COVID-19 pandemic has seen the UK in three national lockdowns to date, and long periods of social isolation. This situation has increased the already heightened levels of fear, anxiety, stress and depression for UK cancer survivors. Now, more than ever, the cancer community need a digital solution to support connectedness. The HOPE Programme can reach out a hand when access to usual support may be limited.
So why do we need an RCT?
The HOPE programme has been popular with people living with different types of cancer at different stages, throughout the UK. It is available to anyone over the age of 18 years, with a cancer diagnosis, and access to the internet through a computer, tablet or smartphone.
The feasibility randomized controlled trial (RCT) will give us a clear sign of the practicalities, acceptability, and usefulness of a running full-scale RCT. We can learn valuable lessons from this, such as whether people with cancer are willing to take a chance on being randomized to a waiting list versus immediate start. Beyond that, we can see if people are still engaging with us at the end of the programme.
Having published our protocol for the HOPE RCT in an open-access journal, we can share our methods with other researchers. The peer-review process has also helped us to make the best research design choices. This means we can maximise the benefits and minimise the participant burden for our volunteers.
Our early results from the feasibility RCT look very promising indeed.
Hope for the future
Our early results from the feasibility RCT look very promising indeed. We have mirrored findings from our previous studies showing improvements in mental health and wellbeing. The data shows that most participants complete at least half of the programme. They are also willing to tell us about their experiences, which helps us to make improvements.
These key factors give us the green light to plan a full-scale RCT. This means more participants and more data, allowing us to draw robust, scientific conclusions. In doing so, we can help many more thousands of people living with cancer.
‘Attrition’ is a common problem for eHealth interventions, and simply means the rate of participant drop-out before the trial ends. One important lesson that we have learned is that attrition need not be disastrous to a trial.
Human nature ensures that everybody is different, with varied needs, coping styles, and personal circumstances, for example. ‘Alan’ could take what he needs from the HOPE programme within just a few sessions (e.g., mindfulness relaxation techniques). However, ‘Brenda’ may attend every session and access all additional support before she feels accomplished.
Both ‘Alan’ and ‘Brenda’ would likely give the same five-star review of the programme. Similarly, both could show improvements in health and wellbeing. However, their engagement data would look quite different – because of the ‘attrition’, in ‘Alan’s’ case. Self-management interventions for people with cancer should be holistic and person-centred, and so should our approach to data analysis and evaluation.
If you want to know more about the HOPE programme, please visit our website.
For details of HOPE programmes for cancer survivors in your area, please contact ServiceOpsLearning@macmillan.org.uk.