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First website dedicated solely to cancer caregivers

‘Cancer Caring Coping’ (www.qub.ac.uk/sites/CancerCaringCoping) is a new online resource created by cancer caregivers for cancer caregivers. It is based on research by Dr Olinda Santin from Queen’s University Belfast, who found that cancer caregivers have poorer health compared to caregivers of other chronic conditions.

The project, led by Queen’s University Belfast and funded by HSC R&D Division Public Health Agency, is a partnership between Belfast Health and Social Care Trust and The Northern Health and Social Care Trust, as well as involvement from the Men’s Health Forum in Ireland and Charis Cancer Care.

Dr Santin, who is a Lecturer in Supportive Cancer Care at Queen’s, said: “Cancer caregivers require specific support and information to prepare them to cope with their role.  The aim of this new Cancer Caring Coping website is to give carers their own voice.  The strongest stories of all use carers’ words and carers’ experiences, and that is what this website represents.

“Queen’s University recognises the unique role cancer caregivers provide and is dedicated to supporting cancer caregivers through evidence based approaches, making it truly effective in improving the lives of carers and those that they care for.”

Gillian Traub, Co-Director of Cancer and Specialist Services at the Belfast Health and Social Care Trust commented: “The Trust are delighted to welcome the launch of this new innovative website for Carers, friends and family members. The Trust recognises the importance of providing information and support to carers when a loved one is affected by a cancer diagnosis.   The value of this website is that local carers can share their stories and experiences and what helped them through their journey.”

The website has been designed to provide a wide range of relevant, supportive and up to date information for carers to ensure they receive the right information and support to care for their loved ones effectively and safely.

Trevor Wightman, a cancer caregiver from Co. Armagh who was involved in the project said: “The first time I heard the term ‘carer’ in relation to myself, was at the initial oncology appointment. I was also aware that there was no ‘carer’s handbook’ – this was learning on the job time.

“Being of a certain age, I of course, turned to internet searches to find pointers to make sure I carried out the role to the best of my ability.  The biggest surprise being that there was a paucity of information or help out there. I wish this website had been around four years ago when I entered a hospital as a husband and left with a new label of ‘primary carer’.”

Early evaluation of the website has identified that caregivers felt that the resource provided useful and relevant information, and reduced isolation and uncertainty in their caregiving role.