Developing and Evaluating a Web-Based Self-Management Programme: iHOPE for Cancer Survivors
Guest post by Dr. Andy Turner, Centre for Technology Enabled Health
The incidence of cancer throughout the world is rapidly increasing with 14.1 million cases in 2012, and the number of new cases projected to rise by 75% over the next two decades. This will see the world cancer burden reach around 25 million cases, by 2030. In the UK, it is now projected that over half of adults currently under the age of 65 will be diagnosed with cancer at some point in their lifetime. Cancer survivors face a number of challenges following primary treatment many struggle with unmet needs including fear of cancer recurrence (FCR) cancer related fatigue (CRF), depression and anxiety.
The growth of online patient groups has resulted in more opportunities for gaining knowledge and social support, leading to improved health-related quality of life. Older adults, in particular, are willing to share self-care information within selected social networks for the purpose of giving and receiving disease-specific self-management information. In the UK 42% of older adults (>65) use the internet and the use of tablets doubled and smartphones trebled between 2012 and 2014.
A research team at Coventry University led by Dr. Andy Turner and Macmillan Cancer Support have recently delivered a web-based support intervention, called iHOPE to over 100 cancer survivors. iHOPE aims to enhance well-being by fostering positive emotions and stimulate positive functioning. A parallel goal is to reduce depressive symptoms. iHOPE is moderated by trained cancer survivors. It incorporates evidence-based exercises based on positive psychology, in addition to elements stemming from mindfulness, cognitive behavioural therapy and problem-solving therapy. 6 weekly sessions cover the following broad topic areas:
Introduction to the course, becoming more positive
Stress management and mindfulness
Managing fatigue and pacing
Body image/sexuality and intimacy and communication
Fear of recurrence and physical activity
Hopes and dreams and character strengths
Our research showed that cancer survivors reported significant improvements in RCR, CRF, depression, anxiety, positive mental wellbeing, hope and gratitude. Participants described the powerful impact of identifying with other cancer survivors, which helped them adopt a more hopeful and inspiring approach to many aspects of cancer survivorship. Weekly goal setting, mindfulness, identifying personal strengths and keeping a gratitude diary were valued activities. Website usability ratings were high. Participants valued the flexibility a web-based course offered, fitting it around work schedules and hospital appointments. This is what some of the participants said about iHOPE:
“…when you get a cancer diagnosis, your life falls apart, you think, ‘…here I am, nobody else has got it.’ Obviously they have, but you know you feel you’re the only one and everybody is going on about the life normally. You can’t anymore. And I think that sort of helps to meet other people. You know, living reasonably normal lives and I think that’s what I will take from the course.”
“I had lost confidence in myself, I had lost confidence within my body, I had lost confidence in living really so for me the character strength activity was really interesting because it highlighted things I recognised as being me before cancer and were still there and I found that very positive.”
“To acknowledge that there are fears and there are worries and there are concerns in all of that but being open and honest about it and what other people have to say and sharing that and realise again it’s the affirmation that you’re not absolutely barking mad and the fears that you have are a shared human experience really in the circumstances of what I’ve been through”
We believe that due to the growing burden of Cancer Survivors in the UK, a large scale development of this programme could be particularly beneficial to support the health and wellbeing of large numbers of the UK population living with and beyond cancer.
If you would like further details about iHOPE, please contact Dr. Andy Turner at a.turner@coventry.ac.uk, or view his Research Gate here.
Publications;
Whiteman B, Grant-Pearce C, Cooper L, Turner A. (1st -4th November 2015) A positive psychological web-based self-management support programme for cancer survivors; eHOPE . 11th National Cancer Research Institute (NCRI) Cancer Conference, Liverpool, UK. Poster presentation.
