Cancer survivors sought for international study on the emotional impact of the disease

Posted on 27th October 2016

Researchers investigating the emotional impact of cancer are looking for people affected by the disease to take part in an international study.

The research team at the University of Chester, (Left to Right) Dr Brooke Swash, Prof Nick Hulbert-Williams, Ms Melissa Pilkington.
The research team at the University of Chester, (Left to Right) Dr Brooke Swash, Prof Nick Hulbert-Williams, Ms Melissa Pilkington.

Led by researchers at the University of Chester Research Unit for the Psychology of Health, the research is being conducted in collaboration with academics from Queen’s University of Belfast; the University of Edinburgh; McGill University, Canada; and the University of Sydney, Australia.

The international team is studying how people cope with the psychological effects of cancer in order to establish the best possible way to provide emotional support at such a difficult time. Anyone aged 16 or over, who has received a cancer diagnosis in the last 12 months, is eligible to take part.

Professor Nick Hulbert-Williams, who is leading the research, said: “Receiving a cancer diagnosis is a huge event in anyone’s life and we are interested in finding out how people cope during this time.

“Some people cope well emotionally, whilst others find it distressing. Cancer professionals have done a lot of research to understand the emotional impact of cancer, in order that we can give people the help that they need. We believe there is still a lot to learn by comparing those who are coping well with cancer, against those who are struggling.

“Our previous research demonstrates that some patients can feel isolated and abandoned after they finish chemotherapy or radiotherapy treatment, and that psychological distress can continue into long-term survivorship. We want to use this research to better understand how and when we should be helping those who are still distressed by their cancer diagnosis.”

The project is being supported by a large number of UK and international cancer support charities, who are advertising the study through their newsletters and online blogs, to help the team recruit a large number of people affected by cancer.

Helen Bulbeck, Director of Services and Policy for brainstrust, a UK based brain tumour support charity supporting the research, said:

“At brainstrust, we know the devastating emotional impact that being told you have cancer can have. It is isolating, disempowering and frightening. We know too that while there is much focus on treatment, there is so much more that could be done to support patients and their caregivers with living with the diagnosis. This research is essential in exploring how people cope in the face of a cancer diagnosis so that patients are well supported, better able to cope and feel more resilient.”

In a novel approach to participant recruitment, this study is recruiting patients through print and social media (Facebook and Twitter) in an effort to identify participants who may not be linked in with mainstream cancer support charities. The team wants to make sure that everyone has the opportunity to participate in this important study.

Elspeth Banks is a cancer survivor and Trustee of the Independent Cancer Patients’ Voice Charity (a patient advocate group independent of established UK cancer charities).

She said: “I was first diagnosed with malignant melanoma in 1996. The trauma I experienced was to be revisited during subsequent recurrences in the years that followed, and particularly so in 2005, when I was informed that I would not survive. I could not fault the excellent medical treatment I received, but there was no support to help me or my family cope with the psychosocial trauma experienced throughout this period. The fear, the stress, the isolation, the loss of self were very real concerns. This research is vital in order that the full range of psychosocial needs can be identified and addressed. The diagnosis and treatment is hard enough. Supporting patients and families to cope with survivorship and the journey ahead is absolutely essential.”

Those deciding to take part will be asked to complete an online questionnaire once every three months, for two years. Each questionnaire will take about 20 minutes to complete. Participants will be free to stop taking part at any time. As a thank you for participating in the research, each time participants complete a questionnaire, they will be entered in to a prize draw with the chance of winning a £50 Amazon voucher. Additionally, everyone who completes all questionnaires will be entered in to a prize draw with the chance of winning an iPad mini.

If you would like to take part in this study, or just find out more information about the research, you can do so by visiting the study website: (http://www.domystudy.com/survey/index.php/841983?lang=en).

Alternatively, you are welcome to contact the research team at Survivorship@chester.ac.uk.

The team will post regular updates on its research, please follow them on Facebook and Twitter:

Facebook: https://www.facebook.com/Cancersurvivorshipresearch

Twitter: https://twitter.com/C_Survivorship