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Improving the wellbeing of cancer patients in the community

Andy Turner
Senior Research Fellow
Applied Research Centre in Health and Lifestyle Interventions
Faculty of Health and Life Sciences Coventry University

Lynn Batehup
Project Manager
Self-management Workstream
National Cancer Survivorship Initiative
Macmillan Cancer Support

Suma Surendranath
Self-Management Learning Programme Development Manager
Macmillan Cancer Support

A number of issues can have a significant impact on cancer survivors' quality of life. This includes concerns about appearance, financial problems and distress over disease recurrence - a significant unmet need that is almost universal among cancer survivors and is exacerbated by physical symptoms. Even when the disease itself has been treated in the clinical setting, the lasting impact can have a significant knock-on effect on the wellbeing of the survivor.

Cancer survivors will live with their experiences of diagnosis and treatment for the rest of their lives and many will need support to learn how to cope with this experience. Additional support from health and social care professionals after completion of treatment can significantly improve a cancer survivor's physical, social and emotional wellbeing.

As the general population increases we need to develop interventions and programmes that are able to effectively support cancer survivors in their recovery and to integrate these services into routine service provision of the NHS.
The National Cancer Survivorship Initiative Vision from the Department of Health and Macmillan Cancer Support promotes access for cancer survivors to services that will support their recovery and rehabilitation after treatment has ended.1 There are services out there, they just need to be better integrated into current provision and made available to all patients.
Macmillan Cancer Support commissioned researchers at Coventry University to develop two bespoke self-management courses for cancer survivors based on extensive research into the role of positive psychology techniques in managing long-term health conditions.

HOPE (Help to Overcome Problems Effectively) is a six-week self-management course based around a framework of positive psychology principles and cognitive social theory, which researchers are able to adapt and tailor to specific long-term health conditions. For the Macmillan intervention two courses were established: one specifically for breast cancer survivors, the other for survivors of all forms of cancer.

Throughout the six weeks, evidence-based psychological techniques are introduced to the participants, along with an understanding of how to incorporate them into everyday life so that everyone is equipped with the tools to better manage their own circumstances.

Goal setting is a key aspect of the programme, as one participant describes: “Goal setting just starting small, just something little and simple made you realise I can do that after all. There's things you can do, you don't have to wait until you're fantastically healthy to do anything, you can do little things and then just work up from there gradually and it makes you realise I can do that, I have got the ability to do that.”

The course is set up around the introduction of an upward spiral of positive emotions and experiences. This supports the idea that increasing positive emotions will lead to improved wellbeing, resilience and coping mechanisms. The fact that these techniques and theories are introduced in a group setting is also significant as it exploits positive group
experiences, such as instillation of hope, imitative learning, altruism and group cohesion. One of the strongest benefits identified by the participants is the ability to meet other people who are going through the same experiences and emotions, allowing them to learn from each other and help each other out.

In this kind of intervention it is important to recognise that shared personal experience is a valuable tool in supporting self-management. As such, as well as building on academic research and evidence for the structure and content of the course, the programme developers also involved cancer survivors and healthcare professionals. Extensive consultation was undertaken to ensure that the activities undertaken during the course would be directly applicable to all participants and fit alongside the healthcare programmes that they had already received.

Cancer survivors were trained as lay tutors to deliver the course alongside relevant healthcare professionals, such as clinical breast cancer nurses. For the participants this offered two perspectives on situations and ideas: one from the healthcare practitioner offering professional expertise; and one from the lay tutor offering advice from their own personal experiences.

This format was appreciated by the participants, who welcomed the involvement of a peer tutor who could talk about ways to manage certain symptoms, the effects of different treatments and the psychological impact this has from a personal perspective. Healthcare professionals were then able to complement this personal experience by bringing professional expertise to often challenging issues.

The healthcare professionals involved in delivering the course also reported benefits that were directly applicable to their day-to-day practice. Practitioners found that they gained knowledge about issues and problems experienced by cancer patients and survivors that they had not previously been aware of from a clinical perspective.

This is because they simply had not previously had the opportunity to take the time to talk to patients in an informal setting. This programme afforded them time to explore some key issues in more depth that would have been impractical in a clinic visit or brief house call. Seeing things from the perspective of the patient influenced how they worked with individuals in the clinical setting.

While still in the pilot phase of development, researchers are already seeing positive results among participants on both courses. Participants reported improvements in cognitive problems, positive and negative emotions, and, most significantly, improvements in levels of fatigue. According to research, fatigue has overtaken nausea as the most distressing symptom experienced by people with cancer both during and after treatment.

It is important for healthcare practitioners to recognise the importance of hope as a component of aftercare and a vital part of recovery. Improving hope agency - or how motivated a person feels about managing their health - can have a long-lasting impact on their emotional and social wellbeing. People who have higher hope agency are more likely to actively engage in health-related activities, an important part of recovery and rehabilitation. Initial results show a significant increase in hope agency (“I can do it”) and hope planning (“This is how I am going to do it”) among HOPE participants.

Feedback from the participants indicates that the HOPE model of using positive psychology techniques in a group setting can effectively support cancer survivors to self-manage their recovery after treatment. Early results suggest that this can have a significant impact on the quality of life and wellbeing of cancer survivors. The benefits gained by healthcare practitioners in working with cancer survivors in an informal setting can also be fed back into clinical practice working with cancer patients still receiving treatment.

The next step is to consider how interventions like the HOPE programme can be integrated into established NHS practice around treatment and care for cancer patients. With effective implementation the transition from treatment to aftercare can become much smoother and survivors will be equipped with the self-management skills to cope with their experiences and work on improving their health and wellbeing throughout recovery. We hope to increase the programme to work with many more cancer survivors as well as adapting the model to support patients with other long-term health conditions.

Department of Health (DH), Macmillan Cancer Support, NHS Improvement. The National Cancer Survivorship Initiative Vision. London: DH; 2010.